living with palindromic rheumatism

From one roomto another: living with palindromic rheumatism

From one room to another: living with palindromic rheumatism

• Executive summary 2

• Glossary of terms 3

• Purpose of this report 4

• Background 4

• Methodology 5

• Responses 5

• Type of respondents 5

• The interviews 8

• What palindromic rheumatism is like 9• Managing palindromic rheumatism 17• Experiences of the healthcare system 23• How palindromic rheumatism affects lives 33• What needs to be done 43

• Conclusion 45

• Appendices 46

Contents

This survey was commissioned by Arthritis Research UK with funding from an anonymous charitable trust. © Arthritis Research UK 2013Published October 2013Report by Word Doctor www.worddoctoronline.com


Left largely to their own devices, people conduct their own research, share symptoms with others through social media and come up with their own coping strategies.

Many suffer from periods of depression as they grapple with a condition that attacks without warning and forces them to make big life changes – giving up work, moving home, deciding not to have children, letting friendships go, giving up hobbies and stopping exercise.

Even GPs who have palindromic rheumatism themselves have struggled to find information to help them diagnose and treat it.

It is clear that lack of research and evidence-based knowledge has given people with palindromic rheumatism a very raw deal.

Arthritis Research UK hopes the evidence gathered for this report, leading to a further clinical study, will begin to redress the balance for all of them, now and in the future.

Palindromic rheumatism is a form of inflammatory arthritis characterised by multiple flares of often debilitating joint inflammation that can move from joint to joint. The effects can be long term and devastating, yet little is known about it.

The evidence in this report shows that chronic lack of awareness, knowledge, information and understanding among healthcare professionals and the public simply adds to the trauma most people experience when palindromic rheumatism strikes.

Nearly 200 people with palindromic rheumatism have contributed to the report. A few have been lucky enough to get the diagnosis and care they needed straight away. But time and again they tell the same story of being brushed off, disbelieved or ignored by healthcare professionals, family, friends and/or work colleagues, despite agonising symptoms that severely disrupt their lives. Even sympathetic doctors are baffled by tests that come back negative and symptoms that come and go or move around. The result is that the condition often goes misdiagnosed or undiagnosed for years, even decades in some cases. Reading these stories, it would be natural to assume there are still many undiagnosed cases of palindromic rheumatism out there.

Those who are lucky enough to have a diagnosis then face a dearth of information about how to manage their symptoms, what treatments they can try and what to expect in the future. It is widely assumed that a significant proportion will go on to develop rheumatoid arthritis (RA), but patients are not given evidence-based information, so fear and uncertainty about the future often accompany their diagnosis. Many say they have no chance to discuss their symptoms and treatment options in any depth with their rheumatologists.

Executive summary

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Note

The evidence in this report is given by people who have been diagnosed with palindromic rheumatism, and whose experiences, opinions, recollections and attitudes may vary. It is entirely anecdotal, and often presented in people’s own words.

Thank you

Arthritis Research UK would like to thank:

• all the people who took the time and trouble to respond to our survey and to share so much about their palindromic rheumatism stories in order to increase knowledge and help others

• the anonymous charitable trust that funded the programme of work on palindromic rheumatism, of which this report is a part

• Jude Irwin of Word Doctor (www.worddoctoronline.com) for her excellent work conducting interviews, analysing responses and preparing the report.

Glossary of terms

• RA: rheumatoid arthritis• PR: palindromic rheumatism• NHS: National Health Service (in the UK)• GP: general practitioner (primary care

doctor)• UTI: urinary tract infection• RSI: repetitive strain injury• A&E: accident and emergency unit

(hospital)• ESR: erythrocyte sedimentation rate (test

to measure inflammation in the body)• ECG: electrocardiogram (test that

measures electrical activity of the heart)• CCP: anti-cyclic citrullinated peptide (test

for antibodies that indicate the presence of RA)

• NSAIDs: non-steroidal anti-inflammatory drugs

• DMARDs: disease-modifying drugs• MS: multiple sclerosis• ME: myalgic encephalomyelitis (chronic

fatigue syndrome)• OT: occupational therapist• IPRS: International Palindromic Rheumatism

Society• RH factor: rhesus factor (level of protein in

the blood)• CRP: c-reactive protein (a protein in the

blood, the levels of which rise when there is inflammation)

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has been seen to precede other diseases, such as lupus, Wegener’s granulomatosis and rheumatoid arthritis. Yet anecdotal evidence suggests it is often undiagnosed or misdiagnosed.

Even with a diagnosis there is very little information about palindromic rheumatism. Treatment options and advice are rare too, due to the lack of research available. By every measure, support for people with palindromic rheumatism is very limited.

This report is about their experiences, and to emphasise that, we have used a striking comment from one of our research participants for our title. The onset of palindromic rheumatism is, she says, like walking from one room into another.

Purpose of this report

Arthritis Research UK commissioned this report in March 2013 as part of a two to three-year programme that will carry out research into palindromic rheumatism. The aims of this part of the work, leading to the report, were to:

• identify people who have been diagnosed with palindromic rheumatism

• learn about their experiences of the condition • find out about their medical journey up to and

since diagnosis.

The findings in the report will help Arthritis Research UK develop and distribute information that will help:

• people who have, or suspect they have, palindromic rheumatism

• healthcare professionals.

It will also be shared with researchers carrying out the next strand of the project. This will be a qualitative (experience-based) and quantitative (figures-based) study into palindromic rheumatism symptoms, diagnosis and treatments.

Background

Palindromic rheumatism is a rare form of inflammatory arthritis characterised by multiple flares of joint inflammation. Flares can happen quickly, move from joint to joint, last for varying periods of time, cause varying levels of disruption and come and go, hence its name from the Greek ‘palindromos’, meaning running back again or recurring. In many cases, palindromic rheumatism


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‘The onset was so sudden – it was like walking from one room into another...’


Type of respondents

Most respondents (84.5%) were women, with only 31 men getting in touch. This does not necessarily mean the disease is less prevalent in men. It may simply mean fewer men found the survey or wanted to fill it in.

Most respondents wanted to talk about their condition and were grateful to be asked. Most were UK-based. Some were from overseas, and a few had experienced medical systems here and abroad. Ages ranged from 20s to 70s. Some people were very sporty and active, others less so. Occupations ranged widely from manual to desk-based and a reasonable number of respondents were healthcare professionals themselves, from nurses and GPs to NHS managers.

Methodology

We used three methods to capture information from people with palindromic rheumatism:

• a survey they could fill in on the Arthritis Research UK website, or by post

• in-depth telephone interviews with a sample of questionnaire respondents

• in-depth written questionnaires filled in by some respondents.

The survey questions are all included in the appendices (page 47).

Responses

Expectations about response rates were low, due to the unresearched nature of the disease and the fact that it is difficult to diagnose and its prevalence is not known.

We used a range of methods to try and reach people who had a diagnosis, including:

• articles in Arthritis Today magazine and on the Arthritis Research UK website

• a social media campaign• press releases to various publications• bulletins to GPs and rheumatologists• a request to palindromic rheumatism bloggers

to spread the word.

The response has far exceeded expectations. At the time of writing 196 people had completed the online and postal surveys in the four months to July 2013, and responses were still coming in. Of the 196, we interviewed 24 in depth and a further eight completed more detailed written questionnaires.

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‘It’s very rare for someone to take an interest...’


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Summary of online and postal survey data

Time waited for diagnosis

For most people, diagnosis does not come quickly. Nearly a quarter (22%) do get a diagnosis within a year, but nearly half (44%) have to wait between one and five years, while 29% wait longer than that. Some report going undiagnosed or misdiagnosed for well over 20 years, in some cases as long as 40.

Joints affected

Hands (including fingers) and wrists are the primary locations for attacks (91% and 89% respectively), closely followed by shoulders and knees (each 77%), feet, including toes (76%), elbows (62%) and ankles (61%). Hips, neck and back score 55%, 42% and 32%.

One respondent in the interviews mentioned that she has flares in her jaws. Following this, we asked all other interviewees if they have jaw flares. Of the 24 questioned, 50% said they have experienced flares in their jaws. This is a much smaller sample than the 196 respondents to the online and postal survey, but since the survey did not provide this category it may be worth noting.

Drug treatments tried

Most people have tried non-steroidal anti-inflammatory drugs, such as ibuprofen (57%), diclofenac (32%) and naproxen (41%) and others (8.5%) with varying degrees of success and different experiences of side-effects. Nearly half have tried analgesics such as paracetamol (47%), paracetamol/codeine (44.5%) and others (7%). In terms of disease-modifying drugs, over half have used hydroxychloroquine (56.5%), while only 21% have used methotrexate and 20% sulfasalazine. COX2-NSAIDs are used by 7%, and biologics by 2.5%.

Responses to the online and postal survey

Many more respondents are continuing to complete the survey, but this report focuses on the responses of the first 196 people who responded, including:

• 31 men• 165 women• 133 people based in the UK.

Responses

Detailed responses are included in the appendices (page 48). A summary of highlights is given below. Sometimes percentages do not add up to 100%, because some questions were unanswered or because people supplied multiple answers.

Age of onset

The optimum age for onset of palindromic rheumatism seems to be in early adult to mid life, with first flares occurring most often for people in their 40s (26%). However, some of our online respondents say they had symptoms as children (0.5%). Some of our interviewees also report having childhood symptoms, which went unrecognised at the time. A very few others did not get symptoms until they were in their 60s (7%) and 70s (1.5%)

Source of diagnosis

The vast majority of people (93%) get their diagnosis from a specialist, rather than their GP. Many report GPs attempting to make a diagnosis, but only 4% successfully diagnosed palindromic rheumatism. GP interviewees who have the condition themselves report being baffled by their own symptoms and then facing a lack of information about it.


Other drugs mentioned include steroids such as prednisolone (12%).

Alternative therapies and lifestyle changes tried

Over half of respondents (57%) say they pace themselves in order to manage their condition. Some use or have tried herbal remedies (14%), yoga or Pilates (11%) and meditation or mindfulness (10%). Only 7% modify their diets and 6% use pain management clinics. A very few (less than 5%) use or have tried other solutions, including antibiotic treatment, water therapy, acupuncture, joint protection programmes and marijuana.

Interviewees reported a lack of support groups available to them and being given no helpful guidance on diet or exercise. Some are trying or have tried elimination diets or the introduction of elements such as Jewish chicken soup. Mindfulness meditation courses have helped some come to terms with their condition and feel more able to cope with it.

Summary of online and postal survey data

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In the following pages we have used case studies and direct quotes from the interviews to illustrate these themes. In the appendices (page 48) you can see the interviews in full.

A number of strong inter-linking themes and sub-themes emerged during the interviews and from analysis of the online and postal survey results.

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The interviews

Themes

Experiences of the healthcare system

• the difficulty in being believed, often causing people to doubt themselves

• tests and communication of test results• the difficulty of getting a diagnosis, the

number of misdiagnoses and the length of time people wait for their diagnoses

• varying experiences of primary care and care in rheumatology departments

Managing palindromic rheumatism

• attitudes to and impact of medication• the use of alternative therapies and lifestyle

changes, such as diet and pacing oneself• the development of coping strategies

How palindromic rheumatism affects lives

• the life-changing nature of the condition• coping with the emotional impact of

unexpected change, worries about the future and the possible links to other conditions

• the implications for work and benefits• lack of information or advice generally and

inadequate knowledge and understanding among healthcare professionals and others

What palindromic rheumatism is like

• the sudden onset of symptoms for many people, whether for the first time or each time a flare happens

• the severity of flares and where they strike• the triggers and warning signs• living with extreme fatigue

What needs to be done

• raise awareness among the public• increase knowledge among health

professionals to minimise likely current levels of under-diagnosis

• provide better information about managing the disease day to day

• provide research-based data about outcomes for people with PR

• develop treatments designed specifically for PR


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Sudden onset

Frequently, respondents report being completely taken by surprise by their first palindromic rheumatism symptoms. Some woke up in the middle of their first attack; for others the flare came on unexpectedly while they were at work or home doing their normal activities. Nearly everyone remembers their first flare as a dramatic event, characterised by extreme and often debilitating pain. For many this sudden, unpredictable onset applies to every flare they go on to have.

What palindromic rheumatism is like

• One Thursday evening, the most excruciating pain suddenly appeared just up from my wrist and then spread into the wrist. It was like no pain I’d ever known. By morning it had swelled up and I couldn’t move it at all. By the Tuesday it had subsided. But the next Thursday I had exactly the same pain in the other wrist. I went to see the doctor with my hand still swollen and he said it was very strange.

• The onset was so sudden – it was like walking from one room into another. From that night onwards it’s just been mad. I can feel it start to rumble and I know that within minutes I’ll be in agony – I can’t plan anything because I don’t know what I will be able to do from moment to moment. Right this minute I could do something but in half an hour I might not be able to.

• First my shoulder felt like someone was ripping it out of its socket. Then it went to my hand.

• So far I haven’t had any sudden onsets outside the house, but I do worry about that – what if it happens when I’m out and I can’t drive home?

• The thing that really shocked me was the speed with which it came on and completely took over and there’s just no going back – it’s just ridiculous really, and I have no explanations as to why.

• You never know when it’s going to happen – I’ve been able to get on a bus and then not get off and have had to stand and wait for someone to come and get me.

• Within a few days every joint was in pain and I was hospitalised.

‘...it completely took over and there’s just no going back...’

The interviews


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Nina’s* story

In the last year, 45-year-old Nina’s life has changed out of all recognition. She has a hectic life looking after her children, who have complex needs, and also running a cake-making business. She suddenly began experiencing excruciating pains in her joints on one otherwise ordinary evening. Ever since she has been on a chaotic journey. ‘From that night onwards it’s just been mad,’ she says.

Luckily she got a speedy diagnosis of palindromic rheumatism, but even so she feels isolated. There is so little information available, and she doesn’t know of anyone else who has the condition. Even her GP knows nothing about it, and some of her friends insist it must be something else that they have heard of, like fibromyalgia.

She’s been taking disease-modifying drugs for just a few weeks and is suffering side-effects that include loss of appetite, weird dreams and extreme exhaustion. Sometimes when she sleeps during the day she feels almost like she’s in a coma – her mind is active and she can hear her family talking but her body is too deep in sleep for her to wake up and tell them. The drugs have not yet made any difference to her flare-ups. They feel, she says, ‘like a million daggers going into one joint – an unbelievably excruciating pain’. And they can come on without warning, just like the first time.

But Nina has adapted her life and still manages to find ways to look after her children and to bake cakes. She remains positive. ‘The more you know, the more you can face it and deal with it and fight it. It knocks you sideways a bit for a while as you try to work it all out. But I will fight and conquer it.’

* Our case studies do not use respondents’ actual names

• I woke up one day and couldn’t lift my arm to brush my hair – my shoulder was too painful.

• During the afternoon my feet started really aching as if I’d done a long walk in my walking boots. I went to a staff meeting and when I got up I could hardly walk to my office.

• It came on quickly in the space of a couple of hours and I couldn’t weight-bear. I got up and fell down because of the pain.

• In the middle of the night, an excruciating pain in my left shoulder made me cry out in my sleep, waking me and my adult daughter sleeping in the next room. We thought it might be a heart attack.

‘...I got up and fell down because of the pain...’

The interviews


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The flares

Palindromic rheumatism attacks are different for different people and at different times – most respondents report no pattern in terms of when, how, where or why they occur. But everyone experiences intense pain that moves from joint to joint and then subsides. Some have visual markers too – such as redness, swelling or a rash – and some have accompanying flu-like symptoms. Flares can last anything from minutes to months, with similarly short or long periods of respite between them.

• I would never have believed anything could be so painful.

• A flare can come on in ten minutes and even go in ten minutes. On average I have ten days of pain a month.

• The flares in my fingers can just last hours, but others can last weeks. In the joints where I’ve had it more often there’s residual pain there all the time. I’d rather have triplets with no pain relief than have this pain. It’s like a million daggers going into one joint – an unbelievably excruciating pain.

• It was really painful to feel all the time like I was walking barefoot on a pebbled beach.

• I had an agonising pain in my wrist. It was like someone hitting me with a sledgehammer and my hand became claw-like. If you’d touched me with a feather it would have been horrific.

• The pain levels vary from 1 or 2 to 10 – the latter are every three or four months. Every month I get flares at level 7 or 8. I’ve got some pain around a third of the time, maybe a bit more.

• I knew I didn’t have the symptoms of rheumatoid arthritis as there was no stiffness between my attacks, but the amount of pain was significant.

• I had a flare-up in my throat, mouth and jaw, which was very upsetting as I could not open my mouth to eat.

• I have one to three days a month of no pain.

• I’d laugh at broken bones compared with this.

‘...some flares make me cry for 18 hours – it hurts when I breathe...’

The interviews


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• The pattern wasn’t always the same, but generally I’d wake with a residual of the previous day’s pain, which would progressively get better till I’d be almost pain free by lunchtime. Then around 5pm it would start wherever it was going to attack that day. It would come on very quickly and continue through the evening. By morning I’d have residual pain and stiffness and the pattern would start again for that day, somewhere else in my body.

• When I get one it normally lasts a minimum of three weeks and can go up to a few months. It peaks, then gradually declines and I suddenly realise I can do something I couldn’t do before.

• I’ve kept a diary of food and weather – but there’s no pattern.

• Some flares cause me pain to the point where I am crying for 18 hours. It hurts when I breathe.

• A couple of times my partner’s taken me to A&E. I’m good with pain, but it comes up so quickly and is so excruciating and regardless of what you take you just can’t get rid of it. But it only lasts a couple of days and then goes as quickly as it came.

• They last six to seven hours and are usually at night. I feel them coming on in the early hours. I may have had slight symptoms the day before, but they tend not to be strong enough for me to realise. It’s like a cramp building – a bit like a labour pain I imagine. They get more and more intense, then peak, then tail off until they disappear. Once the pains have gone, I can’t put any weight on that joint for the next couple of days because it hurts. I just can’t do it.

• It’s like an alien that takes over your body and moves around – everything is affected apart from your head. I can have mouth ulcers one day or cystitis another, or horrific shakes in one hand so I can’t hold a cup.

‘...regardless of what you take, you just can’t get rid of it...’

The interviews


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Triggers and warning signs

Some people say they can never tell in advance that they are going to have a flare and can never identify any trigger for their flares. Even those who keep diaries can find no pattern. But others do identify definite triggers, such as overdoing it, weather changes, repetitive movements and stress. Some say a flare can be caused by a cold or a bug. Conversely, others say a cold or bug can provide a flare-free period.

• The attacks are completely random. I can’t find any food link or any link to anything I’ve done.

• There is no pattern, except that when I’m unwell or very tired I can be fairly sure I’ll have an attack. It appears to be linked with having any sort of infection, like a cold or a bug.

• When I’m working nights I have two sleep shifts and that seems to throw things out.

• If I’m doing something repetitive, like painting, I would get a feeling in my wrist and then it would go to another joint. It would be like that for three or four weeks, then stop.

• I noticed at work if we have a lot of intravenous drugs to give, involving pushing and pulling syringes, then I’ll get a flare in my hands.

• Sudden weather changes make it bad, especially dampness.

• If I haven’t had much sleep I might get a flare. Long-haul flights bring them on. I go to music festivals and I know by the third day I’ll have a bad flare, although it doesn’t always happen.

• I think driving might bring them on. I had to use a cramped courtesy car, which seemed to trigger an attack. I have to keep things moving.

• Before a flare I feel I’m coming down with flu – I get a sore throat and feel achey.

• I suspect stress and the weather – any barometric pressure change.

• Getting a bad cold or flu seems to cause a temporary remission.

‘...I can’t find any link to anything I’ve done...’

The interviews


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• More than once I’d get up in a meeting saying I had to leave immediately as I had a 25-mile drive home. You’d know something didn’t feel quite right. There would be a nagging feeling in the joint and I’d know it was coming. It wasn’t pain exactly, just the need to move around.

• I found working on the tills with repetitive movement made my wrists flare up.

• If there’s a cold going round at work, I don’t get a full cold but when everyone else is fighting it off I am flare-free. It’s as if my immune system is attacking the cold, not me.

• The flares got worse when I stopped taking birth control pills.

‘...a cold or flu causes temporary remission...’

Sophia’s story

Sophia, 41, is managing director of a growing international company that she has built from scratch. Hers is a high-profile, hands-on job that involves a lot of travel and detailed input.

A year ago she began having unusual symptoms. ‘I started getting really angry all the time and losing my temper – this is something I hardly ever do,’ she says. ‘I also had horrific headaches.’ Her GP diagnosed depression and began treating her for that, but things got worse. ‘I started getting odd symptoms – one-day wonders I called them – like mouth ulcers, cystitis or horrific shakes in one hand so I couldn’t hold a cup.’ Finally, Sophia was struck down with pain all over her body and couldn’t get out of bed even to go to the bathroom.

Her GP thought it was reactive arthritis, as did the private rheumatologist she consulted. After tests, the consultant diagnosed inflammatory arthritis and then eventually palindromic rheumatism.

Now Sophia is trying to accommodate her condition while staying active in her business, despite having days when she can barely walk from her car to her front door. She has just started medication and is waiting for it to take effect. She believes her palindromic rheumatism all stems from a norovirus that she ignored, damaging her autoimmune system. Her consultant wants her to take a long rest, but her instincts push her on. ‘You can’t rest when you’re meant to – you have to go on. I’m always a fighter in everything. My work colleagues sometimes see the pain in my face and I’m embarrassed and try to laugh it off. I have to be able to function, drive, be visible, support people.’

The interviews


Fatigue

Many respondents talk about the extreme fatigue that seems to be part of palindromic rheumatism for them. For some it is the result of lack of sleep during flares, but for others it is an ongoing sense of being utterly drained of energy, which often forces them to sleep during the day. One of the big issues is that people around them do not understand the level of fatigue, or how it can impact on their ability to do things.

• Sometimes I have to go to sleep because I can’t stay awake – it just takes over. And other days are better. But it’s this overwhelming desire to sleep. I could fall asleep within 30 seconds at any time of day, even when I’ve just got up.

• Some people in my family will say, ‘You think you’re tired – I’m tired.’ I can tell the difference between tiredness and exhaustion.

• The tiredness is unbearable – I feel utterly wrecked and people don’t understand.

• I just had to go to bed in the afternoons because I couldn’t stay awake.

• It’s the tiredness and not being able to do things that I find the worst – people tend to overlook that side of it. People say they are tired, but it’s not the same. You get to the stage where you can hardly lift your hand to do anything. They don’t get that.

• The worst thing for me was being tired, not being able to sleep, then wanting to yawn and having too much pain to be able to do that.

• Everything is so difficult, and not just because of the flares. You feel like you’re wading through mud. It’s real exhaustion, your limbs feeling heavy, like your body weighs 20 more stone than it does and everything’s too hard to do. People just think I’m being lazy, but I’m not.

• It doesn’t make any difference if I rest.

• I can hear my family talking, but I can’t wake up to tell them. It’s like being in a coma – you can hear but you can’t communicate. You just have to wait.

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‘...you can hardly lift your hand to do anything – people don’t get that...’

The interviews


• The fatigue can be as bad as ME. There are days when downstairs seems a long way away.

• The fatigue element doesn’t come up in any literature. My rheumatologist says it’s not part of it, but other people with palindromic rheumatism confirm that it is.

• Living with severe pain is knackering, but pacing myself doesn’t seem to help.

• My occupational therapist reassured me because she’d had other patients who experienced the fatigue I was getting. It was almost fitting into a fibromyalgia picture. I couldn’t work at all for six months.

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‘...like your body weighs 20 more stone than it does...’

Eve’s story

Eve, 41, is studying for a masters degree, and also works for an academic gown company. But after six years living with palindromic rheumatism, which was finally diagnosed last year, she is having to reassess her life dramatically.

‘I have to adjust to a new me,’ she says. ‘There is a lot of worry about the future. It’s looking like I’ll have to give up my masters. I need to work, but I can’t do both because I am so tired.’

For Eve it’s the fatigue that has the biggest impact. ‘I find the pain fairly manageable, but the tiredness is unbearable. I feel utterly wrecked and people don’t understand. I would have been very organised in the past, but now I can’t be. I still have all the ideas, but I can’t carry things out any more.’

Eve originally planned to work outdoors in a heritage environment, but that’s looking unlikely now. ‘I don’t think I can cope with really cold weather. And because of the tiredness I can’t work problems out any more, so I will have to find a job where I don’t have to think. Not being able to think straight is what’s really breaking my heart.’

Eve is looking at all her options and has ideas for running a business from her home. Her sense of humour is never far away and she has found some control through drugs, diet and various complementary therapies such as acupuncture.

She also gets a great deal of support from a palindromic rheumatism Facebook group. ‘God bless the internet – I wouldn’t have liked to have this before social media.’

The interviews


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Medication

Both attitudes and reactions to medication vary, with some people reporting dramatic changes in their lives due to drug treatment, while others cannot tolerate the drugs they have been offered or want to put off using them, or indeed have tried them to little effect. There is a great deal of natural fear, partly because the drugs available are those used to treat rheumatoid arthritis rather than being specifically designed for palindromic rheumatism, and partly because the short and long-term side-effects can be aggressive. Others are happy to take the drugs available, accepting the risks in order to improve their quality of life.

Managing palindromic rheumatism

• When I saw my rheumatologist, she gave me a steroid injection straight away. It was horrendous and triggered flares everywhere. I was in agony and so tired I couldn’t sit down without falling asleep instantly.

• The best advice at the pain management clinic was don’t wait till it hurts, just keep on taking the tablets. It’s terribly important to feel you’re in control even if it doesn’t work.

• I’ve had no problems with the sulfasalazine since I started it last year, and the rheumatologist has said in six months we’ll try to reduce it. I tried steroids at first to give my immune system a boost and that helped. Sulfasalazine has stopped the major issues.

• Plaquenil has done wonders for me, although I still get fairly frequent and painful episodes. If I really haven’t got time for the pain, prednisolone is my go-to.

• Now that I’m on drugs I’m taking full advantage of the new life I’ve been given. I feel like a new woman. I’m no longer afraid to sit in a chair in case I can’t get up. But there are fears about going blind with the Plaquenil and meloxicam.

• Methotrexate has terrible side-effects and I can’t put myself through that unless I really have to. I will take it as a last resort.

• Without the treatment I feel sure I’d be completely disabled.

‘...I feel like a new woman – I’m no longer afraid to sit down in case I can’t get up...’

The interviews


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• I’m on a strong dosage of hydroxychloroquine and the side-effects at first were horrendous. The rheumatologist hadn’t mentioned anything about them. I was having the worst headaches ever, feeling nauseous, being sick, having diarrhoea, dizzy spells with the room spinning and vivid dreams. I felt really out of it. It took about three months for those to settle down.

• My doctor says methotrexate is the next step, but I’ve said I don’t want to take that until there is some bone damage.

• I’m starting to feel better on the drugs and to have four days without pain has been fantastic.

• Because I don’t take a lot of medication, when I do it does have an effect.

‘...it took three months for the horrendous side-effects to settle down...’

Helen’s story

Helen, 27, is a learning and development manager, who got her diagnosis of palindromic rheumatism at the age of 25. For her, the flare-ups began suddenly in her hands. Simple tasks she would normally take for granted became impossible.

Her GP and her company doctor both thought she had RA. Then a rheumatologist diagnosed palindromic rheumatism – but only after she applied some pressure.

‘I had blood tests, which were negative, and I had to ask for another appointment. He said he didn’t think I had RA, but he didn’t know what it was. I’d started to take pictures of my joints during flares, so I could prove there was a problem, and he diagnosed palindromic rheumatism based on my symptoms alone. He said there isn’t much known about it and the only way to deal with it is to take medication – for him it’s as simple as that. He issued me with drugs that day.’

He did not warn Helen about what to expect from the medication. She had extreme side-effects at first that made her wonder whether she should stop taking it. ‘My GP said he wasn’t surprised or worried about what I was going through, but to stick with it and go back after a few months if the effects didn’t settle down. I found out if you don’t take it with food it can really upset your stomach, which I hadn’t been told. It really helps a huge amount to know what to expect, so it’s worth doctors going through the side-effects.’

Thankfully, the drugs are now taking effect for Helen. ‘I still get flares, but they are less severe. I have more dexterity and don’t feel so disabled.’

The interviews


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Alternative therapies and lifestyle changes

With very little guidance to help them manage their condition, respondents do what they can to seek relief. Many have tried various physical activities, such as yoga and Pilates, or adjusted their mental approach through mindfulness and meditation. Some try acupuncture and acupressure or herbal remedies and dietary experiments. Respondents report widely varying results, from no impact to a perceived impact. Acceptance through mindfulness seems to be a powerful tool for those who try it.

• My body kind of changed my diet for me. I was craving fruit and other things – bananas, sunflower seeds, avocados and beetroot.

• I went to Pilates and yoga – I didn’t think they were helping, and when I was at Pilates I kept getting a sore neck and thought it might not be doing me any good, so I stopped.

• I’m giving up tomatoes, citrus fruit and sugar. It’s all a bit experimental – I’m not always sure what does or doesn’t make a difference so it’s all down to me to work it out for myself. I haven’t eaten wheat in about three years – I was tested and found to be intolerant. I can’t eat rhubarb. I find it very tough not knowing what else I might have to give up – it would be better just to know. I do believe you are what you eat, so I have no processed food.

• Mindfulness makes it okay to not be in control.

• I’ve tried a long course of acupuncture, but it hasn’t been successful.

• Yoga is good for the body and mind but doesn’t help a flare.

• I did a mindfulness-based programme for people with chronic illness. It doesn’t make the pain go away, but it helps you cope.

• Everyone wants to share their miracle cures. I had to change my dentist because I got sick of him recommending a type of vinegar.

• Vitamin D, glucosamine, rosehip, something from a magazine – none had any impact.

‘...it’s all down to me to work it out for myself...’

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• Oil pulling is an Ayurveda treatment. First thing in the morning you put a tablespoon of sesame oil in your mouth and swish it around for 20 minutes to draw out toxins. It’s meant to be great for all sorts, so that makes you doubt. But no one is making profits out of it, and desperation is a curious thing.

• Many forms of arthritis are caused by leaky gut syndrome – your immune system attacks the unrefined things going into your system and causes arthritis. If you boil a chicken carcass with the cartilage in and render it down, the enzymes are similar to our own. It retrains your immune system not to attack. The Americans do it in tablet form, but I am making the soup.

‘...desperation is a curious thing...’

David’s story

David, 53, is a self-employed carpenter. He was diagnosed with palindromic rheumatism after a traumatic period of severe and inexplicable attacks all over his body that put him out of action for some time. He even had a suspected heart attack, despite being fit and healthy up to that point.

David is unconvinced by his rheumatologist’s belief that he also has RA. ‘He doesn’t seem to want to know my symptoms. He just wants to put me on drugs and is hell-bent on getting me on methotrexate. Rather than pull the drawing pin out of your foot, they’ll give you something to stop it hurting. I have markers that can contribute to RA but so do thousands who never develop it. That’s something I’ve had to find out for myself, otherwise I’d have been railroaded into taking this drug. ’

After experiencing fewer, less severe attacks when on an antibiotic for an infection, David would like to try antibiotic therapy. But he says his rheumatologist dismissed this when he mentioned it. ‘Six weeks before he didn’t know what was wrong, then suddenly I had to go on this drug. I would like information about other illnesses it could be and how to tackle medical people who are so, so busy and get them to listen to you.’

Meanwhile, David has been researching alternative treatments and making lifestyle changes. ‘I have cut out white bread and am eating Jewish chicken soup. It retrains your immune system not to attack.’

He has had no flare-ups since taking a steroid drug, and is now reducing the dose to see if the improvement is permanent.

The interviews


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Coping strategies

In order to cope with attacks, which may or may not respond to medication, people have developed strategies to ease the pain. Applying heat and cold, movement, stillness, relaxation and a positive mental attitude are all cited as beneficial. Many people mention getting a great deal of support from other people with palindromic rheumatism through a Facebook group, where they can share information about symptoms and treatments.

• I try to completely immobilise my joints. My GP suggested keeping bags of uncooked rice in the freezer to mould around them, and that really helps. I have several so I can replace them as they warm up. They are not too heavy, and if it’s in my knee for instance, I can have one underneath and one on top.

• I have some anti-inflammatory creams to rub into the joint, I dose myself up on painkillers to take the edge off and I just don’t let anyone go near it, or even breathe on it.

• The Facebook group is the only place I’ve found support. We support each other and if we get a pain we ask if anyone else has had it – you never know if it’s palindromic rheumatism or something else. For instance, I’ve had pain in my groin. I checked on Facebook and someone else had it, so I knew what it was. And it’s good to be able to compare notes on the medications they keep trying us on.

• I just have to learn how to cope – if I have a busy day coming up I rest beforehand because I can’t risk a flare-up.

• It used to distress me a lot more, but now I understand that however long it takes it will stop and things will go back to normal. When I’m in the middle of a flare-up I sometimes think who’s to say this one won’t be permanent? But I try to hold onto the fact that it will abate at some point. I take myself out of things and keep myself to myself and wait till it passes.

• I’m not depressed about it, because I know it can be controlled with drugs.

‘...I don’t let anyone go near it, or even breathe on it...’

The interviews


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• For me warm baths help – I just put my feet in the bath. It doesn’t take the pain away, but makes it a bit less intense. As soon as I take my foot out of the bath the pain comes back. I got some stuff in the States that helps with my wrists – it’s an ice-cold gel, but better than the sort we have here. It’s a cold menthol feeling and it really helps but you can’t get it here – I just buy it when I go on holiday.

• A friend has been trying to teach me to relax better. We go to a beach where there’s no phone signal so all I can do is lie there and relax. That did help, especially when I could feel a flare coming on – it might not develop into a full flare but just be there in the background.

• Sometimes I use a hot water bottle or get into a comfortable position. I get quite uncomfortable in bed and use ibuprofen gel.

• The local hospice for people with life-limiting illnesses has given me a lot of support of late.

• I had to take diclofenac with food but I couldn’t eat because of the pain. The Facebook group suggested cold milk, to take down the inflammation.

• I had a flare when using the tills at work. We worked out the cause was probably not enough range of motion. I spent about 15–20 minutes doing exaggerated movements involving as many of my joints as possible, and the pain in my joints eased.

‘...I know now however long it takes it will stop and go back to normal...’

• I’ve learned to adapt my life and how I am when I have flares – I can generally spot them coming because I feel incredibly tired. And little things like my watch suddenly beginning to feel tighter will tip me off. For me, adapting was the way forward instead of medication, which is so hit and miss.

• I need to see how the medication pans out, but I feel I can control how I feel about it. When I’m feeling okay I don’t dwell too much on what it’s like when I get a flare-up. For the first few days it comes as a shock how bad it is, but it’s not helpful to dwell on it. It’s taken me a while to get to this point.

The interviews


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Being believed

Many of the people interviewed – though not all – describe not being believed by their GPs, rheumatologists, or other healthcare professionals. Some have had positive experiences, even with doctors who admit having no clue what is wrong, but for many the lack of general awareness among healthcare professionals is a major problem. Confusing test results (page 25) and symptoms that move around and fluctuate in intensity lead some people to wonder if they are imagining their attacks, despite their severity. Disbelieving employers, workmates, friends and family all add to the difficulty, prompting some people to simply stop seeking help.

Experiences of the healthcare system

• I couldn’t understand it jumping from one joint to another. I thought, ‘This is madness’.

• If you are faced with people who just won’t understand, you are not going to want to seek help. If I’d seen one particular doctor in my practice I know I wouldn’t have got anywhere – I was lucky. I feel GPs need to be re-educated to make sure they are open to this and can understand the impact on people’s lives. In a way it’s almost like they have no understanding. And unless they have experienced that pain themselves, they never will have.

• When I told a friend I’d been told it might be RA her response was ‘I guess it’s a bit like IBS – kind of in your head and you just have to get it out of your mind.’

• Sometimes I thought I was crazy.

• I went to my GP and said there was something going on. They said it was depression and put me on a weekly visit to keep an eye on me. They offered counselling and pills. They kept putting me on different pills for my head.

• I really couldn’t use my hands. It was hard to convey this to others. I definitely had swelling and inflammation but the pain was disproportionate to what you could see. Even for me as a GP it was very difficult to diagnose.

• My manager said I couldn’t have arthritis at 24.

• I don’t know what’s worse – the pain, the fact that no one understands or that some doctors think it’s all in your head.

‘...my manager said I couldn’t have arthritis at 24...’

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• I asked for a rheumatoid factor test because my granny had rheumatoid arthritis. It came back negative. I went back and insisted on a referral. More tests came back clear. Then I had an x-ray and I cried when that showed nothing.

• I used to dread going to the rheumatologist because I thought he thought I was a fraud. I can’t help it if sometimes I feel well.

• When I have a flare with red marks, people say I’ve been bitten. They don’t listen to me.

• It moved from joint to joint and I’d be limping with one leg in the morning and the other in the afternoon – I thought people must think I was faking. I did wonder sometimes if it was all in the mind.

‘...I can’t help it if sometimes I feel well...’

Bridie’s story

Bridie is 66 and lived with undiagnosed palindromic rheumatism for well over 20 years until it was diagnosed last year. Based in the US, Bridie was working as a care assistant when her flare-ups first started. At first, she put them down to the lifting she did at work, but was puzzled by the fact that the pains moved from joint to joint.

Successive GPs simply brushed off her symptoms because they’d never heard of pain that moved around. ‘I’ve had five children and I have a high pain tolerance, but some of the flares had me almost in tears,’ says Bridie. ‘My family didn’t get it – they just said I was always doing something. But I’m not a complainer. I’d just say I must have banged it.’

For years, Bridie had various diagnoses when she sought help for particularly severe flares, including a torn rotator cuff, a torn meniscus and a muscle problem. Finally, she went to a rheumatologist recommended by a friend, and he diagnosed her with palindromic rheumatism straight away.

‘He was like an angel from heaven. He listened for about 40 minutes and said he thought he knew what it might be. He ran blood tests and called me in a couple of days to confirm the diagnosis. It felt amazing. Out of all the people I’ve seen over the years he’s the only one who has understood what I was going through.’

Bridie is on medication and feels like a new woman, though she is worried about the toxicity of the drugs. ‘I have not had a flare since the day before I went to see him, and I can almost run now. I’m no longer afraid to sit down in case I can’t get up.’

The interviews


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Tests and test results

One of the most baffling things for medical professionals and people with palindromic rheumatism is the unreliability of tests. Often people report having blood tests that show their rheumatoid factors to be normal, while others have high rheumatoid factors but no joint damage. Many submit to test after test, yet report getting confusing messages back from health professionals – some even say their diagnosis has been withheld and only revealed by chance in a letter they have seen to another health professional. Lack of awareness about the tests available is seen as a barrier to getting a diagnosis.

• One morning I woke up and could see my own cheeks. My eyes and cheeks were swollen, with lumps under my cheeks and forehead. The GP said one thing we look for when there is swelling on the face and hands is kidney failure. But my urine sample was normal.

• My blood tests were saying there were signs of inflammation, but my rheumatoid factor was negative so they didn’t really know what to put it down to.

• My rheumatologist thinks it is related to rheumatoid arthritis but my antibodies are negative so they don’t know what to do with it.

• I had more tests but my uric acid levels were at the upper limit of what they should be, so they treated it as gout for a while.

• My blood tests have always been negative so both GPs and rheumatologists always said it was in my mind. The first GP who thought it should be properly investigated said bluntly that I had RA, yet the tests came back negative again.

• I would go and see a rheumatologist when I had a flare-up but they couldn’t find anything wrong. There were no inflammatory markers. They said I had a very slight positive rheumatoid factor in the US, yet in the UK they said I didn’t.

• My rheumatologist said I had a chronic case of reactive arthritis – one of the worst he’d seen. Then after I’d had a bone scan he said it was inflammatory arthritis. Then I had an MRI scan and he diagnosed palindromic rheumatism.

‘...my blood tests have always been negative...’

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• The tests come back normal and two days after being totally disabled you are completely back to the way you were before. You just start to doubt yourself and find it hard to keep going.

• My GP put me in for blood tests and x-rays. All came back negative. I had three rounds of tests in all before getting the diagnosis.

• Because my bloods come back normal it’s confusing and hard for people to gauge.

• My GP did refer me relatively quickly, but she didn’t give me the diagnosis once she had it. I found it myself 18 months later in my notes.

‘...she didn’t give me the diagnosis – I found it in my notes...’

Jenny’s story

Jenny, 60, is a staff nurse. She had her first palindromic rheumatism flare at work 17 years ago. It proved to be the first of many, but Jenny didn’t get a diagnosis until last year because her test results did not give a clear picture.

After the first couple of flares in her wrists, blood tests showed a positive rheumatoid factor. But her rheumatologist found no joint damage. A while later she had another flare in her knee at work, so she went to see him straight away and he gave her an injection in the joint. After a couple of years he discharged her, because he did not know what was wrong. ‘I appreciate if you don’t know what someone’s got it’s difficult to treat them, but it made me feel so alone,’ says Jenny. ‘I just got on with it until, finally, I got another flare in my wrist and the pain was so bad I had to take a week off work. I had more tests and my rheumatoid factor was in the 400s, where it should be below 20.’ At this point Jenny got her diagnosis at last. ‘I was relieved to finally know why this is happening. When all the blood tests were coming back positive but my joints were fine I wondered if it was just my imagination. I had this bizarre tiredness too, and put it down to the menopause.’

Jenny is not taking medication for now as she wants to avoid the side-effects. She’s decided to retire early, despite the financial implications. ‘I don’t want to end up with severe RA and never having had a retirement. Of course that may never happen, but my mother had it and my brother has too. I’m staying positive though – you have to. I found it tough being discharged without a diagnosis, but now I know what’s going on I can accept it.’

The interviews


Getting a diagnosis

Getting a diagnosis has been difficult for many respondents, largely due to the lack of knowledge among healthcare professionals about palindromic rheumatism, puzzling test results that are often negative and no evidence of joint damage. Some have waited decades for a diagnosis, sometimes being treated for other conditions instead. For some people this has eroded their trust in the healthcare system. For almost everyone it was both a relief and a vindication to have the cause of their pain and discomfort finally explained.

• The great relief was being told it wasn’t in my mind, I wasn’t imagining it.

• As a GP I tried to work it out myself, then I went to my own GP. He did some bloods and didn’t know what it was.

• It was pure chance that I got a diagnosis because I was working in a hospital. It would never have happened through my GP.

• I need to know what something is, so I can deal with it. I struggled not knowing what it was.

• I was lucky that my rheumatologist recognised it and diagnosed palindromic rheumatism immediately. I was quite high – in a way I was delighted. I felt justified that I wasn’t going mad.

• My results came back negative. I didn’t really know whether that meant I had RA or not. I said I wanted to go back to the consultant and he diagnosed palindromic rheumatism based on my symptoms alone, not on the test results.

• I was shocked when I got the final diagnosis [after 20+ years], from a rheumatologist recommended by a friend. He was like an angel from heaven. He listened for about 40 minutes and said he thought he knew what it might be. He ran blood tests and called me in a couple of days to confirm the diagnosis. It felt amazing.

• My GP diagnosed me with RSI at first. A work colleague had had viral arthritis and we thought it could be that.

• Because I’d been sent to the rheumatology department that gave me a steer. I found palindromic rheumatism in my own searches and guessed that was what it was.

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‘...I was quite high – in a way I was delighted...’

The interviews


• I’m fine when I know what’s going on, but I wasn’t when I was discharged without a diagnosis. Once you know what it is you can accept it. It’s not normal to go to bed and then wake up and not be able to move. It’s just nice to know it’s a real condition. I didn’t want a label, but at least I know. I feel far more positive now knowing it’s being taken seriously.

• At first the GP thought it could be leukaemia, and then a post-viral reaction. The first consultant I saw thought it was plantar fasciitis and prescribed insoles, which didn’t work. Then they decided it could be gout and treated me for that for a while. I was even tested for tropical diseases.

• My GP diagnosed me with RSI at first. A work

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‘...I need to know what it is, so I can deal with it...’

Rosie’s story

Rosie, 63, is a cathedral manager. She began having symptoms in her early teens, but it was 45 years before she got a diagnosis of palindromic rheumatism. ‘The great relief was being told it wasn’t in my mind – I wasn’t imagining it,’ she says.

Rosie remembers an episode when her fingers and toes flared up as a child. At the time, it was put down to chilblains. ‘But it wasn’t that. I now wonder if it was the beginning of something.’

All through her teens and adult life she has had swollen, painful joints for periods lasting from hours to months at a time. But her blood tests always came back negative, so GPs and rheumatologists always told her the attacks were in her mind. ‘I began to think it really was in my mind. Every time I got a flare-up I got to the stage where I thought it wasn’t worth mentioning. With no explanation I just had to get on with it. Anti-inflammatories didn’t work, so I developed quite a bit of stoicism.’ Eventually, after she had developed osteoarthritis and was seeing a rheumatologist for that, she described her flares again. The consultant immediately diagnosed palindromic rheumatism.

Rosie thinks it’s very hard for people who have no diagnosis because their tests are negative. ‘Once you have a reasonable explanation you can set about learning how to manage your symptoms.’ For Rosie, that involves hammering the pain with steroids when she gets an attack and warning people she might be grumpy when she’s had no sleep. ‘My condition and I have a good battle every so often. I accept it and I know what to do. You can control the symptoms when a flare happens – you just can’t control when it will happen.’

The interviews


Primary care

People’s experiences with their GPs vary widely, with some feeling very supported, while others end up enduring debilitating symptoms for decades because they are not taken seriously at primary care level. The speed of referral to rheumatology units seems to vary depending on the GP and the locality, with people in extreme pain waiting anything from a few weeks up to two years or more. Some have resorted to private healthcare in order to see a specialist. Once palindromic rheumatism has been diagnosed by a consultant, many GPs have told their patients they have never heard of it. Some – but not all – then go on to learn more about it so they can support them. One GP who has palindromic rheumatism herself says the problem lies with GPs, because it is not something they deal with very often, and there is limited information available.

• I got to the stage where I thought it just wasn’t worth mentioning.

• It would be quicker if they admitted they don’t know and sent you to an expert who might be able to help, but not all GPs will do that.

• I went to several GPs over five years and they just brushed it off, saying, ‘Yeah, that’s weird.’

• I feel unsupported by any healthcare professional I have seen .

• I kept going back and saying I still had pain. After a year I was referred to a rheumatologist.

• In this area, anyone with swollen joints is seen by a rheumatologist within a fortnight.

• I had a bad flare and couldn’t even dress myself. My wrists, hands and knees were swollen. I had splints for my wrists at night. I didn’t sleep, I had to sit up at night. I asked if I could see a rheumatologist but I couldn’t get an appointment for five weeks, so I had to go private – I couldn’t stand the pain any more.

• Unfortunately some doctors get very shirty. When you see them the flare has gone or they say the blood tests are negative, so you give up.

• If your GP doesn’t believe you it can take a long time to get referred. There needs to be better education for the medical community.

• With every doctor I go to I have to provide proof of my condition.

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‘...I had to go private – I just couldn’t stand the pain any more...’

The interviews


• My GP did exactly what she was supposed to do and put in a quick referral, saying it was suspected RA, so I got seen very quickly.

• I want to go and give my GP a presentation. She doesn’t get it, even now I’ve been diagnosed. If it feels so bad, why don’t they want to get to the bottom of it?

• She said there was nothing showing up on my blood tests so she got me an appointment with a consultant very quickly and gave me some anti-inflammatory tablets to take and some cream. She also suggested I use ice packs. She very quickly had a brainstorm with the others in the practice. They agreed they had to get me to a specialist straight away, rather than see me suffering for any longer than I needed to.

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• I couldn’t get a rheumatologist, so my GP was treating me. I think there’s a protocol that prohibits GPs from injecting any more than roughly half the amount rheumatologists can use. They should be allowed to do it when you can’t get a rheumatologist.

• GPs’ hands are tied depending on what the rheumatologist says, but you can’t get appointments when you need them, so you’re on your own. I suffered for eight weeks just because I couldn’t see anyone, and then I went private in the end and managed to go back to work within a week and a half after that.

• As a GP I can say the problem lies with GPs – it’s just not something you deal with very often. Our practice has a list of 6,000 patients and only one has this diagnosis. I would encourage people to go to their GP straight away when they have the problem so the GP can see the evidence. It is an urgent thing and it’s okay to say they need to see a doctor quickly. Education is important.

• My GP took about two years to refer me, even after I got a lupus diagnosis.

• I just gave up going to my GP after a while. Palindromic rheumatism needs to be more high profile for people to feel confident about seeking help.

• My GP said right at the start that he liked a challenge, so I always knew he wouldn’t give up until he’d got to the bottom of it.

• Eventually I told my doctor to give me Plaquenil or I’d hang him from the roof by his heels.

‘...they agreed they had to get me to a specialist rather than see me suffer...’

The interviews


Rheumatology care

Many – though not all – respondents express a lot of dissatisfaction with the way they are treated in rheumatology units. The lucky ones are seen quickly and feel they are listened to and involved in their treatment. Others report being kept in the dark and/or being treated insensitively. They also say there is a lack of understanding or concern about the impact of the condition and its treatment, and occasional disbelief in its existence. They are not listened to when they have information to share about their symptoms or concerns about their treatment. Many find it difficult to see a rheumatologist, even when in debilitating pain, and some have resorted to private care.

• She said it was palindromic rheumatism straight away and explained that my GP wouldn’t know, as it’s a rare condition that only specialists are likely to spot. She’s very good and she listens.

• She said, ‘I don’t know what it is but I think you have joints that aren’t happy – I’ll see you in a few years’. By then my hips were aching and I was feeling unwell.

• He told me off and was extremely rude. He was an old-style, upper class expert who said lots of people wait months before they get a referral and what was I fussing about? He told me not to eat cream cakes and get fat.

• There’s an option to ring if you need help between appointments, but when I tried it I found it wasn’t easy, so it’s not very helpful.

• He never refers to palindromic rheumatism and I’ve got a feeling he doesn’t really believe in it.

• I asked him for information on how to manage it, but I didn’t get anywhere. He said this is what you’ve got, there’s not much known about it and the only way to deal with it is to take medication – it’s as simple as that. He issued me with medication that day.

• I really like him and his treatments have been effective, but he keeps saying I have fibromyalgia and polymyalgia rheumatica, which I do not have, according to all my symptoms. I’m going to make a real effort to educate him. I’m hoping we can give him some good information with this survey.

• I was never told it was palindromic rheumatism – it just appeared on a letter to my GP two or three years later.

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‘...you only get about seven minutes...’

The interviews


• He said it was palindromic rheumatism straight away. I’m very lucky to have a young doctor who knew about it. He sends me for scans on my hands every year to see if there are any bone growths or deformities – he says it will go to rheumatoid arthritis because my levels are so high, so he keeps a check on what’s happening and what medication I should have.

• This NHS time thing is hopeless – I’d rather wait longer and have more time so the appointment has some value. In some places you only see a consultant once a year, others it’s twice. And the tie-up between hospital and doctors seems to be a bit loose – they don’t seem to know what is going on. You feel quite insecure and are forced to find out a lot of information yourself – and that can be dangerous.

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• My consultant was really nice but after the first time I’d been I kept a record of my flares and he didn’t want to see it. You feel they’re thinking it’s all in your mind. No one ever asks about the impact this has on my life or how I manage.

• Quite often when I went to hospital appointments I’d be perfectly fine, because you have to wait so long for an appointment. So I didn’t go back to see him for a couple of years because I saw no benefit to it – nothing he could do could make a difference because I could never see him at the right time.

• At the moment the only thing my rheumatologist has to work on is what we would do if I had RA. I am the one finding links to give to him to suggest treatment.

• In the UK you only get about seven minutes, so you never get any feedback – they don’t even read your notes half the time. In the US they are a lot more understanding and take as much time as you need.

• I’ve met some fantastic, lovely, caring people along the way – it’s not all anger. For courtesy, respect, kindness, the whole NHS scores 90 per cent, but at the top end, where it really matters, it’s not good at all.

• I looked at the side-effects and potency of the different drugs and started at the bottom and worked up. My rheumatologist put them in order and I did my own research.

• They’ve never asked how I’m coping with the children. It never occurs to them and then they wonder how people with long-term conditions get depression.

‘...the whole NHS scores 90 per cent, but it’s not good at the top...’

The interviews


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Impact on daily life

There is no question that palindromic rheumatism can have a dramatic impact on people’s lives, especially if it is untreated or does not respond to treatment. Respondents report a range of practical and emotional (page 35) impacts. They have had to adapt or change their normal behaviour, cut down on or cut out hobbies and reduce or stop exercise. Relationships inevitably change as their abilities change. They often have to plan ahead and pace themselves if there is something coming up that they want to do, fearing a bad flare will make it impossible.

How palindromic rheumatism affects lives

• When I have flares in my hands I have to change the way I care for my son, but you just adapt – I have no choice. I have to change his bag for him – I just have to work round it. I have found there’s always another way to do it.

• I had to phone my mum and dad and ask them to come and be with me. It was a nightmare just trying to get down the stairs.

• My business could be ruined if this continues. I have to be able to function, drive, be visible, support people. Their jobs depend on me.

• I couldn’t even unscrew a bottle top or fasten my bra because I couldn’t put any pressure on my hand. Things you normally take for granted became impossible.

• I can still do some things – I can walk around a field with my dogs.

• I was trying to breast-feed and my husband had to hold the baby.

• I try and use an exercise bike if my legs are okay – I choose my moments and hope for the best. I could have a neck freeze at any moment, so it’s best to just live day to day.

• I used to walk eight miles easily but I couldn’t do that now. If I overdo it one day I’d know about it next day.

• When I’m making plans I don’t know if I can carry them out – I warn people I literally don’t know if I’ll be able to do this.

• People lose patience with you. In a way they’ve lost their original friend. I’m not the same. I must have been behaving quite erratically in their eyes before the diagnosis.

‘...I was trying to breast-feed and my husband had to hold the baby...’

The interviews


34

• I would have liked to work outdoors, but now I don’t think I could. I can’t cope with really cold weather. I also can’t work problems out any more because of the tiredness, so I will have to look for a job where I don’t have to think. Not being able to think straight is what’s really breaking my heart.

• I’m not a weakling. I don’t let it take hold of me – I’m not ill in my head, so I won’t give in. The effort for me to get out of bed in the mornings is huge but I force through. I have a huge desire to stay there and sleep.

• I couldn’t look after my newborn baby myself and social services were brought in to help. I was terrified my daughter would be taken away.

‘...my business could be ruined if this continues...’

Kate’s story

Kate, 43, is a quality officer. Everything changed for her when her daughter was born 12 years ago. ‘During labour she wasn’t breathing and had to have an operation,’ recalls Kate. ‘She had a very complicated start with no end of tests. We stayed on a camp bed in the hospital for 12 days and when I got home I had pains in my knees and hips, which I put down to the camp bed. But within days every joint was in pain and I was hospitalised.’

Kate saw a rheumatologist in hospital, who thought her daughter had passed on an infection, leading to reactive arthritis. The worst case scenario was that it would last six months, but Kate still has attacks 12 years on and has recently been diagnosed with palindromic rheumatism by the same doctor.

In practical terms the impact of those first flares was devastating. ‘Once I got home from hospital it was just a young baby and me. My husband took unpaid leave to help, but when he went back to work I couldn’t look after her myself and social services were brought in. I was terrified my daughter would be taken away. I was desperate to look after her, but I just couldn’t do it, which is an indication of the extent of the flare-ups.’

Over the years, there has been an emotional impact for Kate too. ‘I have suffered depression. When I have a particularly long flare I am limited in what I can do. I can’t read a book or do my hair and after a time that brings me down. It used to distress me a lot more but now I understand that however long it takes it will stop and things will go back to normal. When I’m feeling okay I don’t dwell on it too much. It’s taken me a while to get to this point.’

The interviews


35

Emotional impact

Time and again respondents talk about their struggles to deal with the emotional impact of palindromic rheumatism. Common feelings are fear, isolation, confusion, frustration, embarrassment, depression and distress, countered with determination, a positive attitude and grit. Many say their confidence has been knocked, and some have felt like giving up.

• It’s frightening when something controls you.

• It knocks you sideways as you try to work it all out. If I knew what others do about it, that would help. But I’m not one to be beaten and I will get on top of it. I’m going to lick this.

• I was just terrified. I could see my knuckles looked distorted and I remember a doctor saying I had a classic swan’s neck. I didn’t know how long I’d be like that.

• To have social workers come round and let them take my newborn baby and care for her was traumatic. And that’s an indication of the extent of the flare-ups – I was desperate to do those things, but I just couldn’t.

• I didn’t want people to see me when I couldn’t get out of chairs and things.

• I haven’t had the energy to maintain friendships. I don’t want to dump my problems on the dear people who love me. I can’t make myself get in touch and they have almost quit trying.

• People saying you’ll be fine just made me angry.

• Sometimes I feel my life is over. I have to mourn who I was and accept that I can’t push myself. Days when you can’t turn off the tap make you feel utterly useless. When you say to friends you feel like your life is over they think you’re going to commit suicide, but it’s not that.

• I’ve had to give up almost everything social.

• I’ve found who my friends are, and it’s very few.

• There’s a certain level of loneliness.

• I’ve spent a lot of time crying because of the pain and not wanting to carry on and not being able to do things with my kids. I get to the stage when I can’t even do the washing up, or get in and out of the bath.

‘...letting them care for my newborn baby was traumatic...’

The interviews


36

• I’ve learned coping strategies, but the thought of my kids going through it is terrifying.

• It’s emotionally distressing and disruptive. You don’t know where it’s going to turn up next or what you could or should plan – that adds a different layer of stress. Doctors need to understand there is a big psychological impact.

• It’s taken over my life. I still have all the ideas, but I can’t carry things out any more.

• I suffered depression and when I have a particularly long flare I am limited in what I can do and people can’t see that – I can’t read a book or do my hair and after a time I feel that brings me down.

‘...I cry because of the pain and not wanting to carry on...’

Erica’s story

Erica, 43, is a mechanical engineer who loves to be fit and active. She first noticed something was wrong with her wrist after her daughter was born. Her GP put it down to a softening of the bones after giving birth. The pains went on for a long time, and by the time she’d moved to the US they were in her hips and knee too. ‘At that stage it could be really bad for a week, then I’d go months without any pain anywhere,’ says Erica. ‘I was doing a lot of exercise and boot camps – I was very fit.’

Rheumatologists in the US quickly diagnosed palindromic rheumatism and advised her to manage it without medication as long as she could. But now she’s back in the UK, Erica feels she’s on her own, with unsympathetic doctors who don’t have time to listen and talk to her about her options.

Erica has started to take medication and hopes this will change things. ‘I want to get back to doing all the things I did before, especially the exercise and just feeling heaps better. The last few months I’ve spent a lot of time crying because of the pain and not wanting to carry on and not being able to do things with my kids. Not getting out and about. You get to the stage where you can’t even do the washing up, or get in and out of the bath. You feel very down when you get the flares. You ask why is it happening to me and why can’t I do the things I want to do any more? And you feel tired and grumpy. There don’t seem to be any groups that meet, so you don’t have a support network. Other forms of arthritis do and they have regular meetings and get consultants coming along to talk to them. But most people have never heard of palindromic rheumatism.’

The interviews


Possible links

Many people talk about medical episodes, lifestyle choices or incidents in their past that they suspect might be early indicators or triggers for their palindromic rheumatism. Some also have other conditions, such as autoimmune diseases or allergies, that developed before or alongside their palindromic rheumatism. Some women cite the hormonal changes around pregnancy, giving birth or the menopause as a factor. Many focus on the possible link to rheumatoid arthritis, speculating about whether they will get it. Some people say there is RA in their family, while others say there is no such history. Some already have RA alongside their palindromic rheumatism.

• I wondered if being on medication for migraine for years could have triggered it.

• I discovered I had Hashimoto’s disease, which is another autoimmune disease.

• I had a big flare-up when I was 11. All my fingers and toes flared up and they said I had chilblains, but it wasn’t that. I now wonder if that was the beginning of something.

• I didn’t know my depression was one result of the pain, or that fibromyalgia was in there doing its part to create havoc in my body.

• I have osteoarthritis and Prinzmetal angina – the latter went undiagnosed until I had an attack when I was in hospital.

• I have had all kinds of allergies since reaching adulthood – skin, food, chemical, plants, animals of every kind, even all insects.

• My aunt had severe RA – by the time she was older she was crippled. My father could walk faster than I could at 82. He had some arthritis, but nothing like that, so I’m reasoning that this gene comes from the arthritis side of the family.

• I’d been unwell and perhaps had a miscarriage – we’d not checked it out. I just carried on and put my illness down to that. I do wonder if the hormonal changes might have been a trigger – it’s said perhaps palindromic rheumatism comes as a result of hormonal changes.

• One thing that has crossed my mind is that you tend to associate arthritis with older people. Do I have a bigger propensity for it in my own old age because of this? I don’t want to be like that.

‘...they said I had chilblains at school, but it wasn’t that...’

37

The interviews


• This condition developed in a year when I ended a 12-year relationship and I believe it’s not uncommon for autoimmune diseases to kick in during times of change.

• I don’t want it to go to RA. My brother has it, and for my mother it was so severe, within four years she was bedridden. I wonder whether my mother had PR – there was a very sudden onset for her and she died within ten years, but you can’t think like that.

• I remembered I’d had shingles the year before. I’d moved closer to home to help my parents who have osteoarthritis, and at that time I was getting electric shock-type feelings down my hand. Now I feel that might have been linked.

• There’s no family history of any joint problems.

• During labour my daughter wasn’t breathing so she had to go into theatre. She had a very complicated start, and I always wondered if there could be a roundabout connection.

• My vitamin D deficiency blurs things. People with palindromic rheumatism need to know there are different pains – they need to know if another condition could be masking it.

• Around the time this started I had a tooth pulled and had antibiotics and I got candida from it. I don’t know if there’s a link.

• I’ve nursed people with RA and my mother had it severely at 65. But people with RA get joint deformity and that’s never happened to me.

• I was always worried and wondered how I would know when it turned to RA. The consultant said I would know because the pain wouldn’t go away. At least now I’m on the right medication for when/if that happens.

• It’s slightly worrying that about 50% of people with palindromic rheumatism go on to get full RA – basically you’re sitting on a volcano.

• When I was 10 I was treated for chilblains on my hands but it failed. I was referred and diagnosed with palindromic rheumatism at hospital.

• There’s no family history of RA, so where did it come from?

• I have a theory that palindromic rheumatism seems more closely related to lupus than to RA.

‘...I wonder if hormonal changes might be a trigger...’

38

The interviews


39

Work and benefits

Respondents report a range of issues around work and benefits. Some employers are understanding and supportive, while others are sceptical about the disease and not willing or able to adapt. In some cases people have had to give up their jobs because they are physically unable to do them any more. Others have reduced their hours or changed their jobs. Benefits agencies seem to have no understanding or knowledge of palindromic rheumatism, if our respondents’ experiences are anything to go by. One who is no longer able to work because of her condition was told it is non-disabling, so she was deemed fit to work.

• I suspect many people have found it difficult to get any benefits when they can’t work because of their palindromic rheumatism. You can’t explain that 90 per cent of the time it’s fine but the other 10 per cent it’s hell.

• If you only have negative tests you can’t really point to anything.

• I couldn’t hold down a full-time job because I can’t predict when I’ll be well enough to work. As a freelance I manage my time and workload.

• I’d been getting heaps of work but I went from that to nothing because I couldn’t work. I went to the bottom of the heap.

• My PA has had to make all sorts of rearrangements when times are difficult.

• I’d have to explain there might be days I can’t work. I’ll never get a job that way.

• My manager gave me access to my emails so I could work from home during a flare. This was not exactly an appropriate response, given that my flares affected my hands so badly.

• I agreed with my employer that if I got it under control I’d go back, but I have never managed.

• When I applied for disability benefits there were three doctors. They hadn’t heard of palindromic rheumatism .

• I was a chef, but I can no longer chop, so I’ve had to give up work.

• It’s looking like I’ll have to stop my masters. I am going to have to do some work, but I can’t do both because I’m so tired.

‘...I went to the bottom of the heap...’

The interviews


40

• I can’t get benefits because my husband works, and I get the lowest disability benefits possible because they say it doesn’t disable you. There could be at least 15 days of the month when I’m not functioning and the other 15 days I try not to do too much so as to avoid getting the disabled days.

• My employers have spent an awful lot of money on getting equipment, software and training to allow me to work from home. But what will it look like if my rheumatology reports say there is nothing wrong?

• I will try to extend my working life as long as I can. It’s very hard as my husband’s job has gone belly-up because of the recession.

‘...I’ll have to stop my masters. I can’t do that and work, because I’m so tired...’

Jean’s story

Jean, 56, has been forced to give up her job as a cook because of her palindromic rheumatism. Luckily, she got a diagnosis quickly, but the impact on her life has been significant. ‘I used to work in a bakery and had lots of flare-ups,’ she says. ‘My hands were really bad and they thought I was accident-prone. I used to think I’d hurt myself. Then when I was diagnosed I went on the sick. I agreed with my employer that if I got it under control I’d be able to go back, but I have never managed. You never know when a flare is going to happen. I’ve been able to get on a bus and then not get off and have had to stand and wait for someone to come and get me.’

Jean has always worked, but now feels her condition makes a job impossible. At the same time, she’s unable to get much in the way of benefits. ‘They say it doesn’t disable you. There could be at least 15 days of the month when I’m not functioning and the other 15 days I try not to do too much so as to avoid getting the disabled days. I sit up all night to ease the shoulder pain, but people don’t understand because they haven’t heard of it. I went to a disability hearing and no one had looked it up or knew anything about it.’

Jean’s life has been curtailed in other ways too. ‘Cooking was my thing and I can’t do that like I used to. I don’t go out anymore. I went to my brother’s 40th wedding anniversary but I got there and had to come home. I am always thinking ahead if there is something coming up, planning what I can do to try and be fit enough to do it. My son is getting married next year and I will have to have two pairs of shoes in case I get a flare.’

The interviews


41

Inadequate knowledge/information

People are left to their own devices to find out about palindromic rheumatism, with GPs and even rheumatologists apparently having little or no information to give them. Several report being given a diagnosis and nothing else, while some were given information about rheumatoid arthritis. They would like more information about causes, looking after themselves, treatments and their side-effects and how it might progress.

• Because my GP had never heard of it I felt alarmed and wanted some answers about where it had come from.

• My rheumatologist didn’t have any information to give me, but she told me I was perfectly capable of managing my symptoms.

• I did a literature search and couldn’t find very much – I had to request a paper written in 1981. It was quite good, but not by today’s standards.

• I have read what other people have written in blogs. This can be counter-productive sometimes – it depends where you look.

• Arthritis Ireland sent me a pack, which was more geared towards RA and osteoarthritis – they didn’t know much about PR.

• I’d particularly like a presentation for my GP.

• I’ve never met a healthcare professional who knew what it is until I told them.

• I was left to come home and go online to find out what on earth it was.

• I have read what other people have written in blogs. This can be counter-productive sometimes – it depends where you look.

• Information on tests would be helpful. It would have been good to know what are available and what you should ask for, because the RA test isn’t necessarily going to do the job. If people know that CCP tests exist they can ask for them because their GP might not know about them.

• As a GP it’s really difficult to diagnose because the symptoms can fit with other conditions as well. It may even be a spectrum disorder. Future outcomes would be a good thing to know. It would be useful to know whether you should make the most of things while the sun shines.

‘...I’d like a presentation for my GP...’

The interviews


42

• I found out about the drugs myself and I found out about the condition myself. I read up whatever I could find.

• We also need more information about the fatigue and how to cope with it. A lot of information is more about the illness than the person and the impact it can have.

• We have a new GP in the practice where I work and she saw me taking painkillers and asked what the problem was. I told her it was palindromic rheumatism and she said, ‘What’s that?’ I had to explain it to her.

• My husband and I are GPs, and we thought it was reactive arthritis.

‘...I had to explain to the new GP what it was...’

Amanda’s story

Amanda, 57, is a GP. When she got intermittent pain and swelling in her hands she tried at first to work out for herself what was wrong, but couldn’t. ‘I went to my own GP and he didn’t know what it was either,’ she says. ‘I assumed it was a rheumatology issue because it was so disabling, but it seemed worse in many ways than what I’d seen with other people’s inflammatory diseases. I really couldn’t use my hands, but it was hard to convey this to others. The pain was disproportionate to what you could see. It was very difficult to diagnose.’

On being referred to a rheumatologist, Amanda quickly got a diagnosis of palindromic rheumatism. She set about trying to find out as much as she could about the condition, but with little success. She did a literature search, but the only medical paper she could find was written in 1981, and she still has many more questions than answers. ‘I don’t even know what the prevalence of palindromic rheumatism is. There’s not much information about treatments and I wonder how much consensus there is on existing knowledge. What is the natural course of it and what is the role of anti-CCPs? I know my levels have dropped, but I don’t know what that means. Everyone does the test but no one knows why. Hydroxychloroquine was recommended in the 1981 paper, but it didn’t have proper trials in the past so I’d like to know if there is any evidence to say whether it’s particularly helpful or not.’

For Amanda, the medication route is working well. ‘I asked for hydroxychloroquine and it has completely stopped the attacks. I’ve had no side-effects. I can’t believe how well it works. I’m going to try stopping it soon, to see what happens.’

The interviews


43

The research outcomes people want

Respondents are all very pleased that a study into palindromic rheumatism is being carried out. When asked what they would like to see as outcomes, they were very keen to know more about how palindromic rheumatism develops and what the future may hold. On a practical level, they want to know how to lead a normal, active life without having a negative impact on their joints. They want to see more research on medication specifically for palindromic rheumatism, and to have more information about the effects of the medication currently used. Overwhelmingly, respondents want the medical professions and the general public to have a better understanding about how palindromic rheumatism affects people’s lives.

What needs to be done

• The clearer the picture the easier it is to tackle it. It would be good to know the causes. I’ve been told it’s not hereditary and there’s no RA in my family, but it would be good to know if there’s a weak gene or something.

• Hydroxychloroquine didn’t have proper trials in the past so it would be good to know if there is evidence to say whether it’s particularly helpful.

• I’d like to see how blood test numbers compare. My rheumatologist says my RH factor is way off the charts, too high to indicate RA. He says my CRP is also exceedingly high. I don’t know if that is normal with palindromic rheumatism.

• It would be good to have access to support groups online or in person.

• Almost what we need is a list of questions to ask your medical expert, ‘What can I expect, what should I do about this?’ Also, you go online and it says a third to a half of people with palindromic rheumatism go on to develop RA. That’s a very bald, frightening statement to make. Maybe it has to be said, but how much research is there behind that statement?

• We need to educate the medical profession. All the statements out there should be looked at and proven, before they can say a third to a half of people with PR go on to get RA.

• The medication I was given is a very harsh one and I had no idea what to expect. It would have helped to know what the side-effects were likely to be.

‘...as a doctor I don’t even know what the prevalence is...’

The interviews


44

• I’d like quicker diagnosis for people, research to find specific treatments for palindromic rheumatism, and ultimately a cure.

• What are the other treatments available in the rest of Europe? They use more alternative methods alongside the traditional. I’ve lived in France and treatments are completely different. And the other thing – are there any specialist consultants in this particular thing? You just get given a consultant and they may or may not specialise in palindromic rheumatism.

• The medical profession needs to know this shakes your foundations emotionally as well as physically. We think how can it be that I can’t walk at 9am but by 6pm I’m dancing?

• I’ve never seen anything in Arthritis Research UK’s Hands On publications [for health professionals] about palindromic rheumatism. As a doctor I don’t even know what the prevalence is. More information about treatments would be good. Is there any real consensus on existing knowledge?

• You want to know what you’ve got and what you can expect. You need to know what the symptoms are so you know you fit in to something that is known about and recognised. Will it get better or worse and what can you do that might be helpful? Should you do anything differently? When should you go back to your doctor? The answers to questions like that.

• Research on treatments. It would be helpful if they could find out when it changes to RA, what might trigger that, and whether people can have both at the same time. The worry is it’s never going to attract much funding if there are so few people who have it.

• I hope this research makes a difference to our quality of life.

• There should be more about the amount and type of exercise you can do. They said I could do what I liked, but the next time I went I was inflamed and in pain and they told me to be careful. They just don’t know.

• The psychological impact of going into remission and not knowing how long it will last needs to be understood. Every time you get a bad flare after a remission it’s another loss, when you realise it’s still here.

‘...I hope this research makes a difference to our quality of life...’

The interviews


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Conclusion

According to the anecdotal evidence from our sample, palindromic rheumatism almost always causes sudden – often extreme – life changes. It appears to strike out of a clear blue sky, although many people have theories about what might have triggered it in their own case.

Faced with what can be devastating and inexplicable symptoms and confusing test results, people who have palindromic rheumatism are all too often a puzzle to their GPs. Many experience misdiagnosis, or have no diagnosis for years. Some are told they are imagining their symptoms. Many feel that is what their GP thinks, even if he or she does not say it. Nearly half wait between a year and five years to be given an explanation for what is causing their symptoms. Some wait far longer, in some cases for decades.

Those who are referred to specialists have mixed experiences. Many are diagnosed quickly after referral, but few feel involved in making treatment choices. They do not feel they have a choice about their consultant and rarely feel able to see a consultant when they need to. Some have opted for private care.

There is some mistrust and fear about the drug treatments available and the side-effects and long-term consequences they may have. Some people embrace the medication recommended by their consultants and have good experiences. Others resist medication for as long as they can, or try the medication offered and find it does not work for them. Some have ideas of their own about what works best for them, but many of them do not feel they can have a dialogue with their rheumatologists. There are examples of health professionals who do interact with their patients and work with them to manage their symptoms, but in this sample these are few.

Palindromic rheumatism can have a big emotional impact, as people adjust to a very different life with an uncertain future, which may, or may not, include progression to rheumatoid arthritis. Lack of clear information about what to expect, how to live well and where to get support means many people with palindromic rheumatism feel isolated and unable to plan for the future. They are left to work things out for themselves and adapt their lives as well as they can.

Lack of awareness and understanding by employers, benefits agencies, work colleagues and friends can all force people to feel they have to fight their corner at a time when they feel ill, exhausted and debilitated – and perhaps even confused themselves about the random nature of their symptoms.

This study shows the number of people struggling with palindromic rheumatism in the UK could be higher than thought, with nearly 200 responding to the survey in four months, and a steady stream continuing to respond after the closing date (averaging 17 per month). Difficulty of diagnosis could mean there are many people living with palindromic rheumatism who simply do not know it.

Most of our respondents would love to have more information about their illness, more understanding from people within and outside the medical professions, more say in their treatment and more reliable treatments specifically designed to alleviate the symptoms of palindromic rheumatism.


Appendices

46

Contents

• Online and postal survey data 47

• Interviews in full 54

• Written in-depth responses 172

• Picture evidence 194


47

Online and postal survey data

The survey

This is the form the online and postal survey took:

Name Date of birth Male/female Occupation Email address Phone number Based in the UK How did you hear about this study?How old were you when your symptoms started? How old were you when you were diagnosed with palindromic rheumatism?Who diagnosed you with palindromic rheumatism? Which of your joints are affected during an attack? • Hands (including fingers)• Wrists• Elbows• Shoulders• Neck• Back• Hips• Knees• Ankles• Feet (Including toes)What treatments have you tried?:• Paracetamol• Paracetamol/codeine • Anti-inflammatory drugs (list given)• Disease-modifying drugs (list given)• Biologic therapies (list given)• Complementary or alternative therapies (list given) • Lifestyle changes We would really like to hear your story in more detail – can we contact you by phone?


Respondents

Many more respondents are continuing to complete the survey, but this report focuses on the responses of the first 196 people who responded, including:

• 31 men• 165 women• 133 people based in the UK.

Responses

Below are percentage answers to individual questions. Sometimes the responses do not add up to 100 per cent, because some questions were unanswered or because people supplied multiple answers.

NOTE

Nearly half of respondents found out about the survey via social media, but

most were drawn in via traditional routes, including internet searches that took them to the Arthritis Research UK website and Arthritis Today magazine.

Social media, including blogs:

46% .......................Arthritis Today magazine:

8% ....Word of mouth:

7% ...Other publications:

14% .......Internet search/Arthritis Research UK website:

25% .............

• How did you hear about this study?

48



49

NOTE

The optimum age for onset seems to be in early adult to mid life, with first

flares occurring most often for people in their 40s. However, some of our

interviewees did think they may have had symptoms as children, which went

unrecognised at the time.

Pre-teens:

0.5% .Teens:

7% ...20s:

14% .......30s:

21% ...........40s:

26% .............50s:

18% .........60s:

7% ...70s:

1.5% .80s +:

0%

• How old were you when your symptoms started?



50

Up to 12 months:

22% ...........One to five years:

44% ......................Six to 10 years:

12% ......11 to 15 years:

5% ..16 to 20 years:

4% ..Over 20 years:

8% ....

• How long was it before you got a diagnosis?

GP:

4% ..Rheumatologist or hospital consultant:

93% ...............................................

• Who diagnosed you with palindromic rheumatism?

NOTE

For most people, diagnosis does not come quickly. Nearly half have to wait

between one and five years, while 29 per cent wait longer than that.

Some report going undiagnosed or misdiagnosed for well over 20 years, in

some cases as long as 40 years.

GP respondents with palindromic rheumatism reported being baffled by their own symptoms and then

facing a lack of information about the condition. With so little awareness

and information, diagnosis by GPs is understandably very rare.



51

Hands, including fingers:

91% .............................................Wrists:

89% ............................................Elbows:

62% ...............................Shoulders:

77% ......................................Neck:

42% .....................Back:

32% ................

• Which of your joints are affected?

Hips:

55% ...........................Knees:

77% ......................................Ankles:

61% ..............................Feet, including toes:

76% ......................................

NOTE

One interviewee mentioned the jaws as a site for flares. Following

this, we asked all interviewees if they had jaw flares. Of the 24

questioned, 50 per cent said they had experienced flares in their jaws. This is a much smaller sample than the 196 respondents to the online survey, but since the survey did

not provide this category it may be worth noting.



Paracetamol:

47% .......................Paracetamol/codeine:

44.5% ......................

Ibuprofen:

57% ............................Diclofenac:

32% ................Naproxen:

41% ....................

Hydroxychloroquine:

56.5% ...........................

• What drug treatments have you tried?

Methotrexate:

21% ..........Sulfasalazine:

20% ..........

Other analgesics mentioned include: • morphine 1.5%• Tramadol 4%• Tylenol 0.5%• Zapain 0.5%• Temgesic 0.5%

Other non-steroidal anti-inflammatory drugs mentioned include: • meloxicam 2.5%• diflusinal 1.5%• indometacin 2%• nabumetone 0.5%• Indocin 0.5%• Relafin 0.5%• Dolobid 0.5%

Other disease-modifying drugs mentioned include: • leflunomide 3.5%• azathioprine 1.5%• gold 0.5%• penincillamine 0.5%

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Analgesics

Non-steroidal anti-inflammatory drugs

Disease-modifying drugs



Pacing myself:

57% .............................

Yoga/Pilates:

11% ......

Meditation/mindfulness:

10% .....Herbal remedies:

14% .......

• What alternative therapies or lifestyle changes have you tried?

Diet modification:

7% ....Pain management groups/clinics:

6% ...Fewer than 5 per cent have tried the following alternative therapies:

• Ice• Heat• Antibiotic treatment• Water therapy• Biofeedback• Joint protection programme• Acupuncture• Massage/reflexology• Homeopathy• Tai Chi• Cherry juice• Reiki• Cider vinegar • Vitamins• Exercise• Marijuana

Other drug treatments mentioned include:

• COX2-NSAIDs, such as etoricoxib (0.5%), Celebrex (2.5%), Arcoxia (2.5&) and Vioxx (1.5%)• biologics, such as etanercept (1%), infliximab (1%) and Humira (0.5%)• steroids such as prednisolone (12%).

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Interviews in full

The interviews, conducted by telephone, were typed up as people spoke, and as far as possible reflect their own words. Where questions were not answered, these have been left out.

A 45-year-old female carer. UK resident, diagnosed recently and quickly, after sudden onset.

At the onset of your symptoms, where did you seek help or information?

My GP.

What were the symptoms that prompted you to seek help or information?

One Thursday evening, the most excruciating pain suddenly appeared just up from my wrist and then spread into the wrist. It was like no pain I’d ever known. By morning it had swelled up and I couldn’t move it at all. I went to my GP after the weekend, but by then it was starting to settle down. The GP said we should wait and see how it went and that she would arrange some blood tests. By the Tuesday it had subsided. But the next Thursday I had exactly the same pain in the other wrist. I went to see another doctor with my hand still swollen and he said it was very strange. He sent me for blood tests. By the time I went for those it had flared up in my right shoulder. It was just so painful I couldn’t touch my shoulder. I couldn’t understand it literally jumping from one joint to another. I thought, ‘This is madness’. And the onset was so sudden – it was like walking from one room into another. From that night onwards it’s just been mad. It’s so frustrating. I can feel it start to rumble and I know that within minutes I’ll be in agony – I can’t plan anything because I don’t know what I will be able to do from moment to moment. Right this minute I could do something but in half an hour I might not be able to. I would never have believed anything could be so painful. When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? Blood tests.

What did your GP or health professional think was going on?

My GP thought it might be gout and gave me some tablets to see if it settled down. They made no difference. She said there was nothing showing up on my blood tests so she got me an appointment with a consultant very quickly and gave me some anti-inflammatory tablets to take and some cream. She also suggested I use ice packs. By this point the pain was jumping into my knees and hips.


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In your opinion, how much did the following people understand what you were going through before your diagnosis?

• Partner or spouse – he has been brilliant – we have children with very complex needs and he’s always there to help.

• Friends – they’ve been really wonderful.

How long did it take for you to be formally diagnosed with palindromic rheumatism after you first sought help?

Three months – I was 45 when it started and diagnosed this year.

On getting your diagnosis, where did you get or find information about palindromic rheumatism?

• GP – no.• Rheumatologist – she gave me details of a website to look at. She said to be careful not to over research it.

She gave me some leaflets on rheumatoid arthritis, and pointed me in the direction of Arthritis Research UK. • Internet sites – those recommended by my rheumatologist, and some I found via Google.• Charities that support people with palindromic rheumatism – Arthritis Research UK.

What further information would you like to help you manage your symptoms?

When I went onto the main Arthritis Research UK website they didn’t have anything about palindromic rheumatism. So I Googled palindromic rheumatism and looked at other things. That’s when you start to question it – I was trying to see what might have caused it or whether I’d had it for a long time without realising. I wondered if being on medication for migraine for years could have triggered it. It would be reassuring if I could find something to link up the symptoms. Because my GP had never heard of it I felt alarmed and wanted some answers about where it had come from.

How do you think people who have PR or think they have it could be encouraged to seek help?

It’s a hard one because if you are faced with people who just won’t understand you are not going to want to seek help. If I’d seen one particular doctor in my practice I know I wouldn’t have got anywhere – I was lucky. I feel GPs need to be re-educated to make sure they are open to this and can understand the impact on people’s lives. In a way it’s almost like they have no understanding. And unless they have experienced that pain themselves, they never will have. It would be quicker if they just admitted they don’t know and sent you to an expert who might be able to help, but not all GPs will do that. There should be better general public awareness

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too. A lot of people say to me, ‘Are you sure it’s not fibromyalgia?’ People want to put it in a box they understand. But this isn’t the same and people just don’t get it. When I was reading about it I was saying, ‘Yes that’s it, that’s exactly it,’ and it made so much more sense.

Did you have to make any of these changes to your life before or after your diagnosis?

• Give up work – I am full-time carer for my son, so no. I also bake cakes for clients. • Change work patterns (e.g. go part-time) – when I have flares in my hands I have to change the way I care for

my son, but you just adapt – I have no choice. I have to change his bag for him – I just have to work round it. I have found there’s always another way to do it. It’s amazing what you can do with your forearms and a rolling pin when you’re baking cakes.

• Change job – no. • Change plans for having a family – no, I have a family.• Reduce or stop exercise – not particularly. I’m hoping I can increase it and do some more swimming to keep

the joints supple and tone up my muscles to support them. • Move house – no. • Change diet – yes – this is a bizarre thing. My body kind of changed it for me. I was craving fruit and other

things. I decided I needed more folic acid to support me while taking all the medications. I checked what contained them and it was the things I kept wanting to eat – bananas, sunflower seeds, avocados and beetroot – all the things I was craving.

• Give up hobbies – not yet and I’m hoping I won’t have to – cake making is something I do as a passion. I am making one now for someone for Friday and just hoping I don’t get a flare that will prevent me.

• Pace myself – yes definitely, but it’s very hard to plan ahead. Sometimes I just have to go to sleep because I can’t stay awake – it just takes over. And other days are better. But it’s this overwhelming desire to sleep. I could fall asleep within 30 seconds at any time of day, even when I’ve just got up.

What treatments have you tried, and which have been most effective?

• Paracetamol. • Paracetamol/codeine. • Non-steroidal anti-inflammatory drugs: ibuprofen, indometacin. • Disease-modifying drugs: When I saw my rheumatologist, she said she would give me a steroid injection

straight away. It was horrendous and triggered flares everywhere. I was in agony and so tired I couldn’t sit down without falling asleep instantly. I phoned her secretary and went back to see her. She had done blood tests and it had shown up with positive antibodies for rheumatoid arthritis, but she said I must have palindromic rheumatism because it was jumping around. By then it was in my right shoulder and she tried to

Interviews in full


move it around, but I couldn’t bear to let her touch it. She offered another steroid injection, but I refused because it made it so much worse. She said this had never happened to anyone else, so maybe it was having no effect. She put me on methotrexate and hydroxycholorquine for a fortnight. I’ve seen no benefits yet, I’m just incredibly tired and my appetite has gone. I have an awful metal taste in my mouth all the time and am taking tablets to avoid heartburn to try and counteract that. I am also getting really crazy dreams. If I have a sleep during the day I can hear my family talking, but I can’t wake up to tell them – it’s as if my body’s been switched off but my mind is active. It’s like when you’re in a coma – you can hear what is going on but you can’t communicate – you just have to wait. My dreams are totally nonsensical and vivid, and you try to wake up but you can’t. Some of them are upsetting and I wake up crying. But the exhaustion is so bad I just fall asleep again even though I don’t want to. My appetite has gone – I eat because I have to when I take the tablets, but apart from that I don’t want to eat, apart from fruit and broccoli. I’m not really bothered about other things. I love cooking – it’s a de-stressor for me, but at the moment I can’t be bothered to do that either. Generally the tablets make me feel pretty grim. I increased one of them last week and the other goes up in two weeks.

• Pacing myself.

A key feature of palindromic rheumatism is that symptoms come and go. How long do your attacks last and how long is the time between them?

The flares in my fingers can just last hours, but others can last weeks. In the joints where I’ve had it more often there’s residual pain there all the time. I’d rather have triplets with no pain relief than have this pain. It’s like a million daggers going into one joint – an unbelievably excruciating pain. And it’s very strange – I had it in an elbow joint and I could lean on it but the pain was on the inside, so if I tried to stretch out or rotate my arm it was agony. The slightest little twitch of movement can be so painful, it’s just madness. And you can’t tell in advance. When it happens, you have to hold your arm close to prevent even the slightest movement. And yet a couple of days later I’m fine and there’s no sign of it. So far I haven’t had any sudden onsets outside the house, but I do worry about that – what if it happens when I’m out and I can’t drive home?

Do you find certain things bring on a flare? If so, please tell us what you have learned.

No – there is no pattern at all. The attacks are completely random. I can’t find any food link or any link to anything I’ve done. When there is a flare, I try to completely immobilise my joints. My GP suggested keeping bags of uncooked rice in the freezer to mould around my joints, and that really helps. I keep several bags in the freezer so I can replace them as they warm up. They are not too heavy, and if it’s in my knee for instance, I can have one underneath and one on top. When I have a flare I have some anti-inflammatory creams to rub into the joint, I dose myself up on painkillers to take the edge off and I just don’t let anyone go near it, or even breathe on it.

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Do you feel you have control of your condition?

Not yet – it’s still controlling me and I don’t like that. I hope one day I will be in control, but it’s early days yet. It’s kind of frightening when something is controlling you. When you find you have something no one you know has heard of, it’s very frightening. It knocks you sideways a bit for a while as you try to work it all out. If I knew someone who has it and what they do about it, that would help. But I’m not one to be beaten and I will get on top of it.

To help you live and work with palindromic rheumatism, where do you get support and understanding about how your condition affects you?

• GP – yes – I go there every two weeks for a blood test and they’re really supportive. I’ve got a fantastic surgery.

• Rheumatologist – yes, fantastic – she’s on the end of the phone if I ever need to call her.• Family – yes they’re wonderful.• Partner or spouse – yes. • Friends – I’m very lucky because my son has these complex and unusual conditions, we’ve all grown up

having to learn a lot of things on the way, so now they have something new to get their teeth into.

Do you have any other conditions that have developed since or alongside your diagnosis of palindromic rheumatism?

Rheumatoid arthritis has been confirmed because of the high level of antibody in my blood.

How do you see the future?

I’m going to lick this.

What kind of research would you like to see done on palindromic rheumatism?

As much as possible – from what I can make out there’s not a lot known about it and the more you know the more you can face it and deal with it and fight it. The clearer the picture the easier it is for everyone to tackle it. It would be good to know the causes. I’ve been told it’s not hereditary and there’s no RA in my family, but it would be good to know if there’s a weak gene or something.

Is there anything else about your palindromic rheumatism story that you’d like to share?

The thing that really shocked me was the speed with which it came on and completely took over and there’s just no going back – it’s ridiculous really, and I have no explanations as to why. I will fight it and conquer it though.

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63-year-old part-time female cathedral manager. UK resident diagnosed six years ago after having symptoms for 40 years.


• The internet.• My GP.• Friends and family.• My employer.


From my late teens and all through my adult life I’ve had incidents when various joints have hurt and got swollen for varying times – it could be anything from hours to three months at a time. Blood tests have always been negative so both GPs and rheumatologists always told me it was in my mind. The first GP who thought it should be properly investigated said bluntly that I had rheumatoid arthritis, and because I worked in occupational health I knew what that meant. Yet all the tests were done and came back negative again. I began to think it really was in my mind. Every time I got a flare-up I got to the stage where I thought it just wasn’t worth mentioning. About 12 years ago I was referred to a different rheumatologist because I was complaining of joint problems. She said, ‘I don’t know what it is but I think you have joints that aren’t happy – I’ll see you in a few years’. By then my hips were aching and it was making me feel quite unwell. I developed osteoarthritis and saw the rheumatologist again, and told her about my flares. She said, ‘I know exactly what that is,’ and diagnosed palindromic rheumatism.

What did you think might be causing your symptoms?

What went through my mind was that I knew I had joints that would flare up every so often but as there was no explanation I just had to get on with it. Anti-inflammatories didn’t work so I probably developed quite a bit of stoicism. I had a big flare-up when I was 11. I was in a boarding school when all my fingers and toes flared up and they said I had chilblains, but it wasn’t that. I now wonder if that was the beginning of something.

When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays?

Blood tests.


Successive GPs just said it was all in my mind. 12 years ago my current rheumatologist said I had, ‘Joints that aren’t happy,’ and told me to go back in a few years.

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• GP – I have moved around a lot and most of them didn’t understand – occasionally you’d get one, but my current one referred me when I asked him to.

• Rheumatologist – no – until the most recent. • Family – they didn’t really know because I didn’t tell them much. I am adopted so I have no family medical

history, which means you don’t know what you’re up against.• Work colleagues – I worked in an occupational health department and my boss didn’t have any idea at all. If

you only have negative tests you can’t really point to anything. I still know her as a friend and now I’ve told her the diagnosis, which proves I wasn’t kidding.

• Friends – the only person I shared it with was a friend with RA, but none of us had ever heard of PR.


45 years. I was in my early teens when the symptoms started, and 57 when I was diagnosed, six years ago.


• GP – no. • Rheumatologist – no, she didn’t have any information to give me, but she told me I was perfectly capable of

managing my symptoms. • Internet sites – dear old Google took me to a palindromic rheumatism website and I got an awful lot of

information from that – it was a website I could accept. The great relief was being told it wasn’t in my mind, I wasn’t imagining it.

• Charities that support people with palindromic rheumatism – I looked at Arthritis Research UK and rang them up to ask if they had anything, but they hadn’t. I spoke to one of their nurses [NB Arthritis Research UK does not employ nurses, so the respondent is more likely to have talked to an adviser], who said they are working on it.


It’s very difficult because ironically by chance I’ve now met two other people who have it, one of whom had a very sudden onset. Almost what we need is to have a list of questions to go and ask your medical expert, ‘What can I expect, what should I do about this?’ Also, you go online and it says a third to a half of people with

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palindromic rheumatism go on to develop RA. That’s a very bald, frightening statement to make. Maybe it has to be said, but how much research is there behind that statement? I don’t think I will develop RA, because I think if I was going to, I would have by now. I think people just need to know what to ask. Unfortunately some doctors get very shirty.


By the time you get to the doctor the flare has gone or they are saying the blood tests are totally negative, so you give up. One of the greatest difficulties is that people don’t know that Arthritis Research UK exists. People need to know that they can get support from organisations like that. A leaflet with the title ‘Unexplained joint pain’ might seem more relevant to people than one called palindromic rheumatism. Something that says do you have these symptoms, are all your blood tests clear? The next thing to say would be, don’t worry – there may well be a reasonable explanation. People assume you can take a tablet and everything will go away, but managing the symptoms is often the only way you can cope, and you have to learn how to do that. It’s still an immense relief to know what is wrong, because then you know what you’re dealing with. When you get the symptoms you know what it is and you learn how to cope. Having the fear of where it might lead is not particularly helpful. Is there really any proof of the percentage of people with palindromic rheumatism who go on to get RA? Leaflets need to say you may develop other arthritic conditions – but they need to manage it properly.


• Give up work – no.• Change work patterns (e.g. go part-time) – my three conditions combined to make me go part-time when I

was 60. I’m a bit more wary of spending a long time on my feet. • Change job – no.• Change plans for having a family – no – I don’t have one.• Reduce or stop exercise – if anything I try and do more – more swimming. But I can’t walk so far because the

hips play up. I’ve changed the exercise to take the strain off my joints. But I still do walk when I can – I love it. • Move house – no – although I’m now in a one-storey cottage. • Change diet – no – no one’s ever told me to.• Give up hobbies – no. • Pace myself – everyone will tell you I haven’t learned to pace myself – my work colleagues

lecture me. I have just broken my foot but I’ve carried on working – I just can’t sit at home. I am giving training sessions and have been hobbling about, so I’m being lectured by all of them.

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• Paracetamol.• Disease-modifying drugs: my rheumatologist immediately put me on some vicious tablets that made me feel

terribly unwell. I can’t remember what they were. I’ve also tried hydroxychloroquine, regular paracetamol, prednisolone (I take a bigger dose when I have a flare-up, which is a great benefit because when I have a flare I cannot get rid of the pain and my rheumatologist told me to hammer it with steroids), alendronic acid because I take steroids. They know I don’t have osteoporosis because I have had a bone scan. And I take tramadol – a morphine-based painkiller – when I need it.

• Pacing myself – no, I can’t do this. • Pain management groups/clinics – yes, because I had severe neuralgia. But looking back I think that was

palindromic rheumatism in one of the joints in my neck, because it went away and the neurologist said there was no explanation, except for perhaps a bone pressing on a nerve. The best advice there was don’t wait till it hurts, just keep on taking the tablets. It’s terribly important to feel you’re in control even if it doesn’t work.


There is no pattern, except that when I’m unwell or very tired I can be fairly sure I’ll have an attack. I’m getting a lot of flare-ups with my foot in plaster.


It appears to be linked with having any sort of infection, like a cold or a bug. If there’s anything else wrong – a virus or stress – that seems to trigger it. But it’s largely down to physical stress, rather than emotional. One of my strange side-effects is when my hip flares I’m awake – my body goes into overdrive because it can’t cope. I watch an awful lot of TV at 2am. I know what will help and I just get on with it. And I warn everyone the next day that I’m not in the best frame of mind. Sometimes I just get an hour and a half’s sleep at night.


Let’s just say we have a good battle every so often. I accept it and I know what to do. But because it’s so unpredictable it’s very difficult to control. You can control the symptoms when it happens, but you can’t control when it happens.

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To help you live and work with palindromic rheumatism, where do you get support from people who understand what you are going through?

• GP – yes, I go and whinge at him. He doesn’t know much about it, but occasionally he wheels in a student to hear what I’ve got.

• Rheumatologist – very supportive and understanding.• Family – I have a brother who has had major problems with his blood and joints, so we moan to each other. • Employer – now I have an HR manager, yes. She used to be an occupational therapist. • Work colleagues and friends – I don’t say much about it, just that I’m having a bad day.


Osteoarthritis and Prinzmetal angina – I’ve had the latter virtually all my life and it went undiagnosed until I had an attack when I was in hospital. The muscles around the heart contract during an attack.


I will carry on much as I am. In my opinion, it’s the osteoarthritis that will be more limiting. And that’s mostly in my hands and feet.

What kind of research would you like to see done on PR?

I’m not sure it’s research that is needed, but education. Educating the medical profession and examining all the statements currently out there. They should be looked at and proven, before people are able to say a third to a half of people with palindromic rheumatism go on to get RA.


I do spend an awful lot of my time writing instructions and leaflets for people, so if Arthritis Research UK want someone to look at leaflets for them – to be part of an editorial panel – I’d be happy to do that. Often people suffering from a medical condition are totally confused and need great clarity in leaflets. The leaflet needs to answer the questions they’ve forgotten to ask, or to which they’ve forgotten the answers. Having worked in occupational health I know the sorts of questions people have. People are very scared of admitting what’s wrong with them at work because jobs are so scarce. Occupational health people in companies may not have heard of palindromic rheumatism and if you’re not articulate it can be very difficult, if you’re scared of losing your job. Most companies are not prepared to accept a minor alteration in working practices or conditions. Often there

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just isn’t the money to alter things. If you have an intermittent condition it’s very difficult to explain to your employers that some days you’re absolutely fine and others you are not, but that you have absolutely no idea when you will have an attack. And that’s very hard for you to manage, but it’s also hard for your family, friends and employer to manage too. Even a leaflet you can hand to them would be helpful, especially a leaflet for employers. What do I as an employer need to know and what can I reasonably expect of my employee? Similarly for benefits agencies. I suspect many people have found it very difficult to get any benefits when they can’t work with palindromic rheumatism. You can’t explain that 90 per cent of the time it’s fine but the other 10 per cent it’s hell.

57-year-old female GP, UK based. Diagnosed quickly three years ago.


My GP – I tried to work it out myself as I am a GP, then I went to my own. He did some bloods and didn’t know what it was. I had to ask to be referred as I had had it for three months by then so I knew I met the criteria for referral. I didn’t want to wait any longer.


Intermittent pain and swelling, mostly in my hands. I knew I didn’t have the symptoms of rheumatoid arthritis as there was no stiffness between attacks, but the amount of pain was significant.


I had no real knowledge of palindromic rheumatism, though we had a consultant who had diagnosed it in some patients so I had seen people who had it. I assumed it was a rheumatology issue but there was nothing visible in the literature. It was so disabling when I had it and seemed to be worse in many ways than what I’d seen with other people with inflammatory disease. I really couldn’t use my hands. It was hard to convey this to others. I definitely had swelling and inflammation but the pain was disproportionate to what you could see. It was very difficult to diagnose.


Blood tests.

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The rheumatologist told me straight away what I had. He did some tests and I had a positive rheumatoid factor and high anti-CCP antibodies, which he thought made it more likely I’d get RA. I had heard of palindromic rheumatism, and had seen some patients with it but mine wasn’t presenting in the same way as theirs.


• GP – not really.• Rheumatologist – yes – he offered to inject me when it flared up on the same day.• Family – they knew it was really sore.• Partner or spouse – he knew I couldn’t do anything.• Work colleagues – I was mostly working single-handed but one of our nurses had RA so she understood.• Friends – I didn’t tell them much because it was intermittent.


Just a few months.


• GP – no. • Rheumatologist – he just said what it was, rather than giving me information.• I looked on the Arthritis Research UK site but there was nothing on it there. There was a palindromic

rheumatism website that was really helpful.• I did a literature search and couldn’t find very much – I had to request a paper written in 1981. That was quite

good, but not by today’s standards.


I’ve never seen anything in any of Arthritis Research UK’s Hands On publications [for health professionals] about palindromic rheumatism – so it would be good to see some awareness raising. I actually don’t even know what the prevalence is. It would be good to have more information about treatments. Where is the best place to go for information? Is there any real consensus on existing knowledge? I didn’t find anything much in the literature about trying other disease-modifying drugs.

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As a person you want to know what you’ve got and what you can expect. You need to know what the symptoms are so you know you fit in to something that is known about and recognised. You need to know what you’ve got to deal with. Will it get better or worse and what can you do that might be helpful? Should you do anything differently, when should you go back to your doctor? The answers to questions like that.


Awareness raising. There’s always a risk that you don’t get the help you want – you need to know there’s some benefit from going to see someone. And even if you know what it is, you need access to information.


• Give up work – no.• Change work patterns (e.g. go part-time) – no.• Change job – no. • Change plans for having a family – no. • Reduce or stop exercise – I couldn’t do it while I was having the attacks, but in between I’ve carried on as

usual.• Move house – no. • Change diet – no. • Give up hobbies – no. • Pace myself – not really – I just have to stop when I have an attack. I don’t have any fatigue.


• Paracetamol/codeine. • Disease-modifying drugs: hydroxycholoroquine has completely stopped the attacks so I am still on that. I’ve

had no side-effects.


They would last up to about four days but they were only really bad for two. I always got at least two weeks between them. They moved around, mostly in my hands, wrists, elbows, neck and once in my knee. I recognised the same pain in different joints – you could always tell by the pain quality that one was coming.

Do you find certain things bring on a flare? If so, please tell us what you have learned. Have you found anything that helps?

Interviews in full


Do you find certain things bring on a flare? If so, please tell us what you have learned. Have you found anything that helps?

No – the only thing that triggered one was when I had a swine flu jab. I’ve had a flu jab since and been fine.


Yes – I can’t believe how well the hydroxychloroquine works. I’m going to try stopping it this summer and see what happens.

To help you live and work with palindromic rheumatism, where do you get support and understanding?

• GP – no. • Rheumatologist – yes. • Family – yes, but I don’t need it.• Partner or spouse – as above.• Employer. • Work colleagues – I haven’t had any attacks in this employment (I have moved since my attacks first

happened). • Friends – they are not really aware. • Other people with palindromic rheumatism – no – but from my experience it is very difficult for other

people to understand what you are going through.


No – I’d already had iritis before when I had shingles in my eye.


I guess I’ve got a fairly significant chance of developing RA but I just think ‘so far so good’. When I did the research, the paper from 1981 said the only thing people seemed to respond to was hydroxychloroquine – so that’s what I asked for.


It’s really having a clear idea of how much of it is around and what the natural course of it is. And what the role of these anti-CCPs is – I know my levels have dropped, but I don’t know what that means. Everyone does the test but no one knows why. The hydroxychloroquine didn’t have proper trials in the past so it would be good to know if there is evidence to say whether it’s particularly helpful or not.

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means. Everyone does the test but no one knows why. The hydroxychloroquine didn’t have proper trials in the past so it would be good to know if there is evidence to say whether it’s particularly helpful or not.

66-year-old female semi-retired admin worker, formerly care professional. US based, diagnosed this year after 26 years of symptoms. At the onset of your symptoms, where did you seek help or information?

• The internet – I can remember putting ‘pain that jumps from joint to joint’ in Google and at that time coming up with osteoarthritis or arthritis. Even today it’s the same unless you actually put in palindromic rheumatism.

• My GP – I went to several over five years and they just brushed it off, saying, ‘Yeah, that’s weird.’


It felt weird – I remember my fingers and hands and then my shoulders. I was getting ready to go to bed and one shoulder was really starting to bother me. I thought I’d lifted something badly. The next day I was in excruciating pain – I was like a zombie and needed to work so I went to my doctor.


Sometimes I thought I was crazy – I had never heard of things moving from joint to joint. I put it down to working in care homes and abusing my joints. I had five children and had a high pain tolerance, but some of the flares had me almost in tears. I treated myself with ibuprofen. To be honest, when I finally went to see a rheumatologist I thought I’d be diagnosed with fibromyalgia – a lot of people seem to get both.


X-rays.


They’d never heard of such a thing as pain moving from joint to joint and then disappearing. When my shoulder was bad, the doctor said I might have torn the rotator cuff – by the time I went to see an orthopaedic doctor a couple of days later it had gone away. He didn’t do an x-ray but said I would need surgery and I refused it. I tried physiotherapy but by then the flare was over. I went through it but I had a gut feeling it wasn’t that.

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• GP – not at all. • Rheumatologist – I was shocked when I got the final diagnosis, which came from a rheumatologist who was

recommended by a friend. He was like an angel from heaven. He listened for about 40 minutes and said he thought he knew what it might be. He ran blood tests and called me in a couple of days to confirm the diagnosis. It felt amazing.

• Family – they didn’t get it. They just said, ‘Oh, you’re always doing something.’ • Partner or spouse – my husband tried to be compassionate but he didn’t have a clue and thought it was

something I must be doing to myself. I was beginning to think that too. At one point I had such a severe, long flare in my knee I thought it was because I’d fallen a few days before. I had it x-rayed and I remember the orthopaedic surgeon saying, ‘You have very little arthritis for someone your age, maybe you tore the meniscus.’ That was another wrong diagnosis.

• Work colleagues – no, I’m not a complainer. I’d be limping or holding myself and they’d say, ‘What did you do?’ But I’d just say I must have banged it.

• Friends – same as above.


Well over 20 years.


• GP – no.• Rheumatologist – he just spoke on the phone to me and said it almost always goes into RA and that it would

need to be treated. He made an appointment for me to go in and talk to him. I don’t like to take a lot of drugs. I told him I am not a pill taker and would prefer a homeopathic way round it, but he said I had to do something and agreed to give me a low dose of medication.

• Internet sites – I did lots of research online once I had the name of the disease. I’m the type of person who has to reason things out. My father’s sister had severe RA – by the time she was older she was crippled. My father could walk faster than I could at 82. He had some arthritis, but nothing like that, so I’m reasoning that this gene comes from the arthritis side of the family.


• Give up work – no. • Change work patterns (e.g. go part-time) – no, but I could see how people might have to – I was determined

to keep going.

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• Change job – I started out working in the nursing unit [of a care home] and got more flares. I told the owner I’d have to get a desk job and the next thing I knew he gave me one and for the last 15 years I was assistant administrator. That meant I didn’t have to do as much walking and lifting, but I ran the activities department and was lifting wheelchairs.

• Change plans for having a family – no. • Reduce or stop exercise – no. • Move house – no – we did move to Florida from New England into a warmer climate, but that was more for

my husband, who had had a heart attack.• Change diet – no. • Give up hobbies – when I’m hurting, I don’t walk as much so I got a dog to make me go out. I used to love to

play horseshoes alongside the men and I was pretty good at it, but I gave up because of my shoulders and arms – I thought I might be damaging them.

• Pace myself – up until now I have been pacing myself. But now that I’m on drugs I’m taking full advantage of the new life I’ve been given.


• Anti-inflammatory drugs: ibuprofen, naproxen, meloxicam.• Disease-modifying drugs: hydroxychloroquine.• Plaquenil – I’m taking 400mg a day and 1 x 7.5mg of meloxicam and I feel like a new woman. But there are

fears about going blind if I take these. I insisted I did not want to go on a steroid. So far it’s working, and started working within a day or two. At the time I wasn’t in a flare, but they had got more frequent and severe – since then I have not had one and I can almost run now. My last flare was in February, the day before I went to the doctor. I’m no longer afraid to sit in a chair in case I can’t get up.


The most excruciating flares would start in the afternoon and last through the night. Then I’d get up in the morning and force myself to function and get through. By late afternoon I’d be okay. It just became normal for me, so I just got used to it. It nearly always affects my arms and shoulders, and once the flare is gone it won’t come back to that joint.

Sometimes I’d have attacks every day for a week or two, or they’d go away for a few months and then come back. In the last few years they’ve been a very big part of my life. And I’ve had general achiness all the time.

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A few months ago, before my diagnosis, I saw an orthopaedic doctor because I had pain in my ankle so unbearable I couldn’t walk. By the time I went for the appointment the pain had gone. He x-rayed and I could see myself there was nothing wrong with my foot. He said I had a very little bit of arthritis in my big toe, but that was pretty good for someone my age. He said I had some sort of muscle problem causing the pain and he said I needed to be fitted for a boot – another misdiagnosis. I use it as a vase with flowers in it. I shared that on Facebook.


They are always completely unexpected.


Right now I’m a new woman – I feel like a new person. My husband has noticed too – I’m a restless sleeper and I would roll over and groan with pain. He says that’s stopped.


• GP – he was shocked when I saw him after my diagnosis. He’d never heard of it and has no idea what I’m experiencing. I’ve known this doctor for 30 years, but he did say the rheumatologist is excellent. It’s just not common here – doctors don’t seem to know anything about it.

• Rheumatologist – yes – but he’s the only one out of all the people I’ve seen over the years. • Family – yes, they’re always supportive and now they’re glad that I’m back to being me. They understand a

little of what I’m going through. • Partner or spouse – as above.• Friends – yes, though they don’t understand it all.• Other people with palindromic rheumatism – I just read comments on the Facebook page – like any other

group when everyone is suffering the same thing, they are very supportive.• Clients – I am self-employed, keeping people out of assisted living. I keep my condition to myself.


No – but I’m worried about the toxicity of the drugs.

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56-year-old female former cook, now unable to work because of palindromic rheumatism. UK based, diagnosed three years ago, after two years of symptoms.


My GP – I went to see him about pains in my shoulder and was treated for a frozen shoulder for a year. I was also diagnosed with gout.


I lived in Spain and didn’t have many symptoms, except for a bad shoulder. Then I got other pains, and then the other shoulder went.


A frozen shoulder, as diagnosed by my doctor back in the UK.


Blood tests, scan, x-rays.


I was diagnosed with pulled muscles or gout, but eventually my GP said there was something else and gave me a blood test. She referred me to a rheumatologist even before the results came through. The results showed up arthritis.


• GP – yes she did understand – she was giving me pain relief and steroid injections. • Rheumatologist – he knew straight away what it was.• Family – they did know I was suffering and that something was not right. They know me and they could see

the swelling. • Partner or spouse – yes. • Work colleagues – they thought I was just accident-prone, but after the diagnosis they understood.• Friends – a few realised. Once it was diagnosed they said at least I knew what it was.

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The rheumatologist said it was palindromic rheumatism straight away. I’m very lucky to have a young doctor who knew about it. He sends me for scans on my hands every year to see if there are any bone growths or deformities – he says it will go to rheumatoid arthritis because my levels are so high, so he keeps a check on what’s happening and what medication I need. On getting your diagnosis, where did you get or find information about palindromic rheumatism?

• GP – she had vaguely heard of it and has now checked up on it and is very sympathetic – she’s seen me in pain and with the swelling. In the last few months I’ve been photographing the swollen joints so I can show what’s happening.

• Rheumatologist – I feel very lucky that he knew about it. • Other people with palindromic rheumatism who I found online or through social media – the Facebook

group is the only place I’ve found support. We support each other and if we get a pain we ask if anyone else has had it – you never know if it’s palindromic rheumatism or something else. And it’s good to be able to compare notes on the medications they keep trying us on – I’ve not found one I can cope with yet.

• Internet sites – I did general searches and found the Facebook group and a site from America about palindromic rheumatism.


Just knowing what symptoms to expect – although it’s different for everyone. But everyone seems to go through the same thing at least once, so it would be good to know where it might happen so you can put those symptoms down to palindromic rheumatism and you know it’ll go away in a day or so. For instance, I’ve had pain in my groin. I checked on Facebook and someone else had it, so I knew what it was. Some people get pain with no swelling, but I do get swelling. But because people can’t always see it, they think it’s not happening. You don’t need the swelling to have the pain, so you can doubt yourself. It would be good if all this was acknowledged in literature about palindromic rheumatism.


The thing is, if they’ve got it, they would seek help – you can’t manage it without seeking help. You really think you’re hurting yourself all the time. Suddenly everything is different. You can’t ignore it – you want to know what’s going on. People do need to know what tests they can ask for – e.g. the antibodies test.

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• Give up work – yes – I was a cook/chef, but I can no longer chop. • Reduce or stop exercise – I do try. Where I live there’s a gym and I try and use the cycle if my legs are

okay – it can help if you choose your moments and hope for the best. You could have a neck freeze at any moment, so it’s best to just live day to day.

• Move house – I am in a tied house for my husband’s work, so I have to cope with stairs – however when his job ends we’ll look for something on one level.

• Change diet – no – I haven’t found anything that triggers it. If I thought eating something would make it worse I’d stop eating it.

• Give up hobbies – cooking was my thing and I can’t do that like I used to. I don’t go out any more. I went to my brother’s 40th wedding anniversary a month ago but I got there and had to come home.

• Pace myself – I do this all the time and am always thinking ahead if there’s something coming up, planning what I can do to try and be fit enough to do it. My son is getting married next year and I will have to have two pairs of shoes in case I get a flare.


• Paracetamol/codeine.• Anti-inflammatory drugs: ibuprofen, diclofenac, but only when I need to as I feel sick all the time if I take

them every day.• Disease-modifying drugs: hydroxychloroquine – my doctor says methotrexate is the next step, but I’ve said I

don’t want to take that until there is some bone damage.


I use heat and cold and rest – the fatigue is unbelievable. I just have to learn how to cope – if I have a busy day coming up I rest beforehand because I can’t risk a flare-up. I can’t bend my knees but I just live with it.


Overstretching myself. I used to work in a bakery and had lots of flare-ups then. My hands were really bad and they thought I was accident-prone. I used to think I’d hurt myself. Then when I got diagnosed I went on the sick and knew that if I went back to work the pain would come back. I agreed with my employer that if I got it under control I’d be able to go back, but I have never managed.

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You’re never going to have control, but you learn to live with it. The only thing that worries me is that I’ve always worked and now I know if I went for a job I’d have to explain that there might be days I can’t come in. I’ll never get a job that way. I can’t get benefits because my husband works, and I get the lowest disability benefits possible because they say it doesn’t disable you. There could be at least 15 days of the month when I’m not functioning and the other 15 days I try not to do too much so as to avoid getting the disabled days. I sit up all night to ease the shoulder pain, but people don’t understand because they haven’t heard of it. I went to a disability hearing and no one had looked it up or knew anything about it.


• GP – yes. • Rheumatologist – yes.• Family – yes – they take the mick sometimes and call me Elephant Man.• Partner or spouse – yes. • Friends – yes, they’re still about – I talk every day with one or another of them.• Other people with palindromic rheumatism – the Facebook group gives me most support. As much

as people try to understand, there’s only so much they can understand if they don’t have palindromic rheumatism themselves.


No – I’ve always been one who carries on regardless. I always put my kids first. I try to do without medication as much as possible. I don’t do heavy work like big shopping.


Much the same unless there’s a big improvement in the drugs available. Methotrexate has terrible side-effects and I can’t put myself through that unless I really have to, so I will wait and see what happens with my annual checks. I will take it as a last resort.


I would like a medication that doesn’t have all the side-effects that the ones we’re trying have. One I was on was giving me massive headaches and stomach pains. It was my choice to stop and only take it when I’m desperate – then I’ll take anti-inflammatories until it eases off. It is pretty good. Tramadol doesn’t even touch the pain so it’s not worth taking them. Instead I have hot baths.

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Tramadol doesn’t even touch the pain so it’s not worth taking them. Instead I have hot baths.


When I applied for disability benefits there were three doctors there and they hadn’t heard of palindromic rheumatism – I find it really difficult to explain it to people who haven’t heard about it. You never know when it’s going to happen – I’ve been able to get on a bus and then not get off and have had to stand and wait for someone to come and get me.

43-year-old female quality officer. UK based, diagnosed two years ago having symptoms for ten years since the birth of her daughter.


My GP.


I’d had my daughter just before Christmas, on 22 December. During labour my daughter wasn’t breathing so she was very poorly and had to go into theatre. She had a very complicated start, and I always wondered if there could be a roundabout connection. She had no end of tests. We had to go back a week later on New Year’s Eve. She was really sleepy and we thought that was good, but three hours later she had not roused and the doctors suspected meningitis. My husband and I stayed on a camp bed in the hospital with her for 12 days. Within a few days of getting home I had pains in my knees and hips, which I put down to the camp bed. I went to my GP and he gave me anti-inflammatories, and agreed it was a result of what had happened. Within a few days every joint was in pain and I was hospitalised. I was trying to breast-feed and my husband had to hold the baby. I had a breast abscess. A rheumatologist saw me while I was in hospital and put me on steroids straightaway. He said that whatever infection my daughter had, she’d passed it to me and it was manifesting as reactive arthritis. He predicted the worst-case scenario would be that I would have it for six months. I am still with him now – however that was the worst attack. I didn’t have much mobility for months afterwards. Once it had settled in all my joints, it lingered in my wrists, fingers and elbows so I stayed with him. I didn’t have pains all the time but I kept having frequent flare-ups. In fairness he tried lots of different tests – full body scans etc – but there was no joint damage. My GP referred me briefly to a different consultant in case it was fibromyalgia.


I was just terrified. Looking at my hands I could see my knuckles looked distorted and I remember very clearly a doctor saying I had a classic swan’s neck. I was quite frightened and didn’t know how long I’d be like that.

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Even when I got home it was frightening, because it was just a young baby and me. My husband had taken unpaid leave to help – but when he want back to work I couldn’t look after her myself and social services were brought in. I was terrified my daughter would be taken away. I had support from a charity called Home Start that came out and did a lot of physical stuff to help me.


Full body scans.


Reactive arthritis, fibromyalgia.


• GP – not really.• Rheumatologist – when I was in the hospital and he thought he knew what it was, he was good. But over the

course of the years, he’s been quite abrasive and doesn’t have the best bedside manner. The times I went to him with no symptoms or joint damage, he obviously wondered where he could go, and I used to dread appointments there. Quite often when I went to hospital appointments I’d be perfectly fine, because you have to wait so long for an appointment. So I didn’t go back to see him for a couple of years because I saw no benefit to it – nothing he could do could make a difference because I could never see him at the right time. But last January I was really run down and was having bouts of tonsillitis and trouble with my joints so my GP said I should see him again. I saw him in August – I explained what had been happening and he said it was palindromic rheumatism straight away. Maybe now it is on his radar.

• Family – they were great to a level, but I was warned my symptoms would come back with my second child. My mum came round to help one afternoon and when she said she had to go to cook dad’s tea I burst into tears because I couldn’t look after my own children. I don’t think my family understood how incapacitated and depressed I was that I couldn’t do things for my children. My parents were of the generation where you don’t really talk about feelings.

• Partner or spouse – he was brilliant and still is.• Work colleagues – they have been more supportive than my family, with the exception of my close family. I

have been very lucky – my employers have spent an awful lot of money on getting equipment, software and training to allow me to work from home.

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• Friends – because of my daughter being in hospital we didn’t see people a lot at the time and there was a degree of pride involved. I didn’t want people to see me when I couldn’t get out of chairs and things.


Ten years.


• GP – no. • Rheumatologist – he gave me a link to the Arthritis Research UK website. • Other people with palindromic rheumatism who I found online or through social media – no, but I have read

what other people have written in blogs. This can be counter-productive sometimes – it depends where you look.

• Internet sites – there is a little bit on the Arthritis Research UK site. I Googled palindromic. rheumatism. There’s not a lot but I found a forum. Reading that was incredibly reassuring.


For me it would be the recognition that it really has validity, from a reputable source, and information to help other people around me to understand it better. Most people are not bothered whether or not they know what I’ve got, but if I’m honest I want my family to understand more. Some people in my family will say, ‘You think you’re tired – I’m tired.’ I can tell the difference between tiredness and exhaustion. I’d like for it to be more acknowledged by GPs and for them to have more information.

I think I do analyse things a lot, but I used to dread going to the rheumatologist because I thought he thought I was a fraud. I can’t help it if sometimes I feel well. I used to worry about the effort they put in at work to support me, as they’ve taken what I say at face value. What will it look like if my rheumatology reports say there is nothing wrong?

I don’t think it’s a taboo subject but people don’t want to say the wrong thing, and that’s down to lack of awareness of its existence. Outside the medical profession you can understand it – but if there was a higher profile, I’d find that helpful. One thing that has crossed my mind is that you tend to associate arthritis with older people. Do I have a bigger propensity for it in my own old age because of this? I don’t want to be like that.

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That’s a hard one. I always think you should go, but if there just isn’t the knowledge in the medical profession, and you’re knocked back, some people will always just suffer in silence. I suffered depression and when I have a particularly long flare I am limited in what I can do and people can’t see that – I can’t read a book or do my hair and after a time I feel that brings me down. That’s another element of it that can mean people simply don’t seek help.


• Change work patterns (e.g. go part-time) – I’ve always worked part-time, but I have changed my contract so I can be more flexible. And I can work from home, which gives me more normality.

• Change plans for having a family – for other reasons I wouldn’t have more now. • Reduce or stop exercise – I’m careful what I do. I was never massively sporty. If I do have a flare-up I don’t do

anything at all. • Move house – I haven’t moved, but social services sent an occupational therapist and I got certain small

adaptations, such as taps and other things around the kitchen to give me more independence, because I have no strength in my arms.

• Change diet – not specifically.• Give up hobbies – I used to sew, but I don’t tend to now because of the problems in my arms. I also used to

struggle with reading because I couldn’t hold books, and then someone bought me a Kindle – that’s given me a massive boost.

• Pace myself – it fluctuates. When I have the warning signs I slow everything right down and try hard to get a lot more rest where I have a bath and go to bed early. Then once the flare goes I try and maintain that. After a while I realise I’m not doing as much as I want to, so I step up the pace and decide to just do what I want while I can do it. I don’t know if that’s a trigger or not. Sometimes maybe I do more than I should. But then I can have a really busy time and get no flare-up.


• Anti-inflammatory drugs: ibuprofen, naproxen.• Disease-modifying drugs: hydroxychloroquine – the rheumatologist prescribed this for me. I went back when

I’d been on it supposedly for six months. But a week after I started taking it my dad died and it hadn’t been on my mind to take it, so by the time I went to see the rheumatologist I’d only been taking it a month. So he will see me again in November. Touch wood, I’ve had no symptoms or side-effects, but I have to be aware of issues with my eyes. I’ve had misinformation on that – I have had a problem with an eye and my optician said it was because of my medication, but the rheumatologist says it’s not.

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When I get one they normally last a minimum of three weeks and can go up to a few months. It does peak, but doesn’t take long to build up and is then bad for a long time and gradually declines and I suddenly realise I can do something I couldn’t do before. The time between them is very hit and miss. At this time of year [spring/summer] I often have a flare-up, but I do at other times of the year too.


I can’t seem to find any trigger that is common to them all. There are no real things I can do to help but I’ve just learned to cope. It used to distress me a lot more, but now I understand that however long it takes it will stop and things will go back to normal. When I’m in the middle of a flare-up I sometimes think who’s to say this one won’t be permanent? But I try to hold onto the fact that it will abate at some point. I take myself out of things and keep myself to myself and wait till it passes. When it flares up in my wrists and elbows it has an impact on my work because they swell up quite dramatically. I’ve learned to adapt my life and how I am when I have them – I can generally spot them coming because I feel incredibly tired. And little things like my watch suddenly beginning to feel tighter will tip me off. I’ve learned to adapt when I have a flare-up – for me that was the way forward instead of medication, which is so hit and miss.


I feel more in control of it – I need to see how the medication pans out, but I feel I can control how I feel about it more. This is quite important. If the medication works over the next six months they want to halve the dose and I may have to be on it for the rest of my life. I wouldn’t choose that, but if it works that’s a small price to pay if there are no side-effects. When I’m feeling okay I don’t dwell too much on what it’s like when I get a flare-up. For the first few days it comes as a shock how bad it is, but it’s not helpful to dwell on it. It’s taken me a while to get to this point.


• GP – no I haven’t seen my GP since I got my diagnosis.• Rheumatologist – when I went back for an appointment about six weeks ago I saw someone else and she

was very good – I found her quite helpful. There’s an option to ring if you need help between appointments, but when I tried it I found it wasn’t easy, so it’s not very helpful.

• Family – they don’t really get it and I don’t tend to talk about it to them – it’s partly self-preservation. • Partner or spouse – he’s great.

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• Employer – very good.• Work colleagues – they know about it and if I’m having a flare-up or it crops up in conversation I’ll talk about

it. They probably feel more cautious about it than I do – they’re careful what to say. • Friends – you put on a front. They know I suffer but they don’t see it so they don’t really understand it. They

can tell to an extent because I wear wrist splints when I have a flare-up, because they force me to be more careful. But I go out of circulation because I’m just exhausted. It’s self-preservation.


I don’t think so.


I don’t know – I’m hoping it will stay like this. If it does I know I can cope. I’ve learned techniques through counselling to help me cope when I’m depressed. And the physical side is hopefully covered by my medication, but also I’m pacing myself, my children are getting older and becoming more independent, so they don’t need me in the same way and that eases the pressure for me. Each year as they get older they need me physically less and less but they also have a greater knowledge of what I’m going through and do things for themselves – I never want them to care for me, but they are helping me, which is different. But who knows?


I don’t know what people do on these things. I think maybe just speaking to people who have been diagnosed. To understand what people go through – the emotional aspect of that and the physical.


At the moment I have my head around it because I’ve learned coping strategies, but the thought of someone else going through it is terrifying – what if it was my kids? I know I’d be different with them from the way my mum has been with me, but that might be because of better understanding. The occupational therapists were excellent when they came round, but they asked standard questions, like can you feed yourself or shower, which were totally insensitive.

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41-year-old female student based in Ireland. Experienced symptoms for five years before getting a diagnosis last year.


• My GP – I went there after my first attack and before my second. • College counsellor – because of the effect the disease was having on me.


I had a shooting pain up and down my shoulder and arm. Looking back now it was centred in my joints – things fall into place as time goes on. I now realise, looking back, I was also experiencing extreme tiredness.


I was worried it might be a heart attack. Then, because it comes and goes, you start to doubt yourself – I really wondered if I was going mad at times. I didn’t realise the constant tiredness was part of it too. I even thought it could be MS or motor neurone disease.


The GP said it sounded like a viral thing. I went again when I had joint pain all over, in my arm, ankles, feet and hips. I specifically asked for a rheumatoid factor test because my granny had rheumatoid arthritis. It came back negative. I eventually went back and insisted on a referral. There were more tests, which again came back clear. Then I had an x-ray and I cried when that showed nothing.


My GP thought it was viral at first. The second time I saw her – about two years later – I was very specific that it was my joints and I wanted to rule out RA. By then I was having flare-ups every three months.


• GP – not at all.

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• Rheumatologist – I was very lucky that my rheumatologist recognised it and diagnosed palindromic rheumatism immediately. I was quite high – in a way I was delighted. I felt justified that I wasn’t going mad. He also suggested I get a vitamin D check and I was found to be deficient in that. I had had to go private – I didn’t have time to wait and I got the top guy.

• Family – no they didn’t understand, but then again I wouldn’t be saying too much either, and you get tired of complaining. They were as supportive as they could be. I think you have to go through it to really understand. It was my sister who flagged up arthritis.

• Work colleagues – they were as supportive as they could be – they didn’t understand but they were pretty good. As well as being a student I work for the company that does the gowns for graduation. Last year I had to reduce my hours and they did that for me, but at the same time they didn’t really get it.

• Friends – to varying degrees. Sometimes you can be quite surprised when someone you expect to be understanding isn’t – it’s a kind of coping mechanism they may have. Also people lose patience with you. In a way they’ve lost their original friend. I’m not the same. I must have been behaving quite erratically in their eyes then, before the diagnosis.

• Other healthcare professionals – I was a guinea pig for a friend training to be an acupuncturist. She was very good – she gave me the name of a book, Say No to Arthritis – eat your way out of it. She understood what I was going through. She had RSI [repetitive strain injury] so she understood pain. My sister was whiplashed and she understood the concept of constant pain. People who have had chronic pain do seem to understand better than others.

• College counsellor – she didn’t understand at all. She just honed in on strategies for getting the work done.


Five years.


• GP – no – when I went back it was after my diagnosis and to get a vitamin D check. She said, ‘That’s a new one to me.’ The fact that it has a ridiculous name doesn’t help. I don’t want to say I have this.

• Rheumatologist – no. He forgot to write up my notes, so I got a second consultation and he diagnosed the same thing, which was reassuring. The second time I was able to ask questions. He said out of 500 new patients a year he’d have about six with palindromic rheumatism. That could be because people are desperate by the time they see him.

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• Other people with palindromic rheumatism who I found online or through social media – the Facebook group is super. There are people there who know exactly what you mean. There’s a certain level of loneliness when you realise you’re the only person you know who has this. For example, there’s just one person in Northern Ireland in the group and none in the south.

• Internet sites – I Googled it continually and checked loads of websites. • Charities that support people with palindromic rheumatism – I contacted Arthritis Ireland and they sent

me a pack, which was more geared towards RA and osteoarthritis – they said they didn’t know much about palindromic rheumatism.


Information on tests would be helpful. It would have been good to know what are available and what you should ask for, because the RA test isn’t necessarily going to do the job. If people know that CCP tests exist they can ask for them because their GP might not know about them. My vitamin D deficiency blurs things. So people with palindromic rheumatism need to know there are different pains – they need to learn to differentiate between one condition and another, so they can tell if another condition could be masking it. We also need more information about the fatigue and how to cope with it. A lot of information is more about the illness than the person. For me, it has thrown up so much emotional stuff and I’ve found that very tough. I turned 40, my son left school, then I got diagnosed and sometimes I feel this is it, my life is over. I have to mourn who I was and accept that I can’t push myself. I have to adjust to a new me. Very little information looks at things like confidence – days when you can’t turn off the tap make you feel utterly useless. When you can’t do stupid, silly things it can really affect you – it’s very undermining. I don’t think the way it will make you feel is very much looked at. The good thing about the group online is you can share stuff like that. When you say to friends you feel like your life is over they think you’re going to commit suicide, but it’s not that. And there is a lot of worry about the future, so it would be useful to have knowledge with which I could plan. If more people had heard of palindromic rheumatism it would be easier to explain to employers. Telling someone to their face that you have palindromic rheumatism – it would be interesting to film their face and slow it down. You can see all sorts going through their minds. I tend to say I have a rare form of arthritis instead. I don’t want people at work to think I’m taking the micky – one minute I can’t do something and then an hour later I can do anything. So information for other people would be helpful, not just those who have it. I’d particularly like a presentation for my GP.

I reckon there must be about 2,000 to 4,000 people with it in Ireland – when there’s such a small community of us it’s so hard to get research up and running.


• Give up work – it’s looking like I’ll have to stop my masters. I am going to have to do some work, but I can’t do both because I’m so tired. I will take a break for a year or two and hope I can adjust.

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but I can’t do both because I’m so tired. I will take a break for a year or two and hope I can adjust. • Change work patterns (e.g. go part-time) – I have altered my work patterns.• Change job – my BA is in heritage studies and I would have liked to work outdoors, but now I don’t think

I could. I can’t cope with really cold weather. I also can’t work problems out any more because of the tiredness, so I will have to look for a job where I don’t have to think. Not being able to think straight is what’s really breaking my heart. I do have a business idea as well for running a cattery. My whole life is up in the air and I don’t know where I’m going. I’m trying to segment it down and decide where I need to make decisions, but I am very impatient. It’s a big learning process.

• Change plans for having a family – I always would have liked more children, but now I don’t know. I love babies. But now if I carry someone’s baby I feel like I’ve had an elephant in my arms – I’d really struggle and would have to think really carefully.

• Reduce or stop exercise – yes. I think that might have been down to the vitamin D deficiency, but at the same time I don’t think I could push myself any more. I used to walk eight miles easily but I couldn’t do that now. If I overdo it one day I’d know about it the next day. Sometimes even if I’m really bad I’ll go for a small walk because I feel better and I employ the use-it-or-lose-it mantra – I find it’s better for the head.

• Move house – no, but I’m looking at that. I find the stairs difficult sometimes and am probably going to have to get aids for the taps and for cooking – sometimes I can’t chop. Sometimes I wonder if I should move back to the city from the country to avoid driving, but that would be very tough. I find driving very hard because of the tiredness – I lose my vigilance.

• Change diet – I’m very careful to try and keep it at bay and not let it get worse. I saw my granny and don’t want to get like that. I’m careful about medication too. A year of NSAIDs ruined her stomach, so if I don’t need it I will avoid it. I’m giving up tomatoes, citrus fruit and sugar. It’s all a bit experimental – I’m not always sure what does or doesn’t make a difference so it’s all down to me to work it out for myself. I haven’t eaten wheat in about three years – I was tested and found to be intolerant. I can’t eat rhubarb. I find it very tough not knowing what else I might have to give up – it would be better just to know. I do believe you are what you eat, so I have no processed food.

• Give up hobbies – I had to cut back on my walking. My life has shrunk. I don’t tend to arrange to go out or go to the cinema any more – I wouldn’t be able to guarantee I could do it. I might be all ready to go but on the day I can’t. I’ve had to cut down on reading – you can’t hold a book for long or stay in any position for long. I used to paint – both pictures and DIY – but I have had to really cut those down. I’ve got lots of plans but I’m never well enough to carry them out. Even going online is difficult – I’ll suddenly find I’ve been too long with the mouse.

• Pace myself – this is a big thing for me.• I’ll probably have to buy an automatic car as changing gear is difficult.• I can’t go into a city without getting completely exhausted.

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• Paracetamol took the edge off it if you got in early enough.• Paracetamol/codeine gave me panic attacks.• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac, naproxen – I find them quite effective if taken

early enough, and I’ve got a little stash with me everywhere. Imelfen will control it if I get in quick enough – it’s made in Ireland. Normally if take it with food it’s great.

• Complementary or alternative therapies: glucosamine (this helped for a while, but then it stopped helping), cider vinegar (this doesn’t get rid of the pain, but it eases the creakiness), fish oil (this is good for stiffness, but the last time I took them the tiredness was ferocious – I’m not sure if that was because of the palindromic rheumatism), a good multivitamin and of course vitamin D, masa for energy, selenium. I’ve tried oil pulling, which is an Ayurveda treatment. First thing in the morning you put a tablespoon of sesame oil in your mouth and swish it around for 20 minutes to draw out toxins. I’ve been doing it for ten days. It’s meant to be great for all sorts, so that makes you doubt. But no one is making any profits out of it, and desperation is a curious thing. I tried acupuncture – that made me feel well, so I’m going to try that again.

• Pacing myself – yes.• Talking therapies – no, apart from the Facebook group. • Other – sometimes I think I can’t eat tomatoes and citrus fruit, other times I get away with it – but does this

just coincide with a flare?


You don’t know when it’s going to be over. I have fleeting pains – I can be literally going along and I get a jab and then it’s gone. It might repeat itself a few times in the day. But the really bad ones are roughly every three weeks and go on for about two weeks to a month.


I have suspicions about my diet and just lately I think that driving might bring them on. I had to use a courtesy car recently and it was quite cramped, which seemed to trigger an attack. Not being able to move around is bad – I have to keep things moving. I take breaks and get up and walk around frequently. I try to avoid overstretching myself too, because that makes me unable to cope with the attacks.


I find the pain manageable, but the tiredness is unbearable – I feel utterly wrecked and people don’t understand.

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You have to try to laugh and see the funny side of it – there are so many much worse illnesses. I just hope I don’t give it to my son. The longer you have the illness you get more of a feel and know what’s coming. But no – I feel it’s in control of me. It might be just a mindset thing. I feel it’s taken over my life. Because I don’t take a lot of medication, when I do it does have an effect. It can be soul-destroying – I would have been very organised in the past but now I can’t be. I still have all the ideas, but I can’t carry things out any more.


• GP – no, she doesn’t understand at all. I feel like going and giving her a presentation. She doesn’t get it, even now I’ve been diagnosed. If someone feels so bad, why don’t they want to get to the bottom of it?

• Rheumatologist – yes. • Family – yes, they are good. My mother has been really surprising, very supportive. She hounded the girl in

the local shop, who has arthritis, for information about the magnets she has. I’m not sure if the family fully understands though, unless they come to stay and see it happening – then they get a feel for it.

• Employer – they’ve been grand and have changed my hours.• Work colleagues – I only told two of them and they were as good as they could be, but they don’t tend to

see it.• Friends – they surprise you with different levels of support. It’s rare for them to see me unwell, but when

they do they take it in.• Other people with palindromic rheumatism – god bless the internet. I wouldn’t have liked to have this before

social media. They are the ones who get it. It’s like a death – if someone hasn’t had to cope with a death of someone close, they don’t get it when it happens to you. People only get it if they’ve experienced it.

• Other healthcare professionals – I have thought of going back to acupuncture – it suited me.• Other – cats – they’re better than TV. They are so funny. I get quite a bit of comfort from them, though

sometimes I can’t pick them up. It’s great to have a pet. The supervisor for my masters has been great too.


I often think there has to be something else – how could I be this exhausted? The Vitamin D deficiency must have been a problem for some time. The rheumatologist suggested I get my bloods checked annually. Around the time this started I had a tooth pulled and had antibiotics and I got candida from it. And then this started. I don’t know if there’s a link.

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When I’m making plans I don’t know if I can carry them out – I’m getting better at warning people I literally don’t know if I’ll be able to do this. It’s great that I don’t look sick, but sometimes I wish I could show people how it does affect me. Because my bloods come back normal it’s confusing for people and hard for them to gauge.There’s a certain element of why me – what the hell did I do? I do try to be thankful that it’s not worse.

60-year-old female staff nurse. Had symptoms for 17 years before getting a diagnosis last year.


My GP.


I was at work and it was so sudden, my wrist swelled up and I had this excruciating pain. I kept taking painkillers, and eventually it stopped. I went to my GP a few months later when it happened to the other wrist. He did a blood test for the rheumatoid factor and it came up positive. He referred me to a rheumatologist but he found that there was no joint damage and said he wouldn’t label me as having rheumatoid arthritis. We left it at that and when I had a flare-up on my knee a while later I was at work [in the hospital] and I went down and he put an injection in my knee then and there. I saw him for two or three years and then he discharged me because he wasn’t convinced it was RA and he didn’t know what it was, so I just got on with it. Then I got another flare in my wrist and the pain was so bad and the painkillers made me so ill, I went to my GP and got referred again. At that point it finally got diagnosed. The pain was so bad I had to take a week off work. The rheumatologist did tests again and my rheumatoid factor was in the 400s, where it should be below 20.


I had no idea. It was just so strange, but I knew there must be something going on. I’ve nursed people with RA and my mother had it severely at 65. But people with RA get joint deformity and that’s never happened to me.


Blood tests.

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They didn’t know.


• GP – not really – I’d go down and say I’m in excruciating pain and they did refer me on but it’s a case of we’re not sure and just get on with it.

• Rheumatologist – I don’t think so – he told me to go swimming and to physio, and discharged me and told me to come back if I had a problem. I appreciate if you don’t know what someone’s got it’s difficult to treat them. At the time I felt it was a bit negative, but I appreciate they can’t focus on just one person. It made me feel so alone at the time. But having said that, when my knee flared up at work he did see me straight away and saw what was going on.

• Partner or spouse – he’s not been too bad, but it’s such an ongoing thing and a couple of times he’s taken me to A&E. I’m good with pain, but it comes up so quickly and is so excruciating and regardless of what you take you just can’t get rid of it. But it only lasts a couple of days and then goes as quickly as it came.

• Work colleagues – no, I didn’t say too much to them. • Friends – I didn’t really tell them about it.


17 years. I was quite relieved to finally know why this is happening. I had never heard of it. I found it slightly worrying that about 50% of people with palindromic rheumatism are said to go on to get full RA – basically you’re sitting on a volcano. It still took a while for the rheumatologist to understand it was PR – she was going to discharge me (I thought, ‘Here we go again’), but decided to scan my hand. She wanted to do more blood tests. I didn’t think she saw any joint destruction, but when she got the blood tests back she put two and two together and made four. She was on the ball.


• Other people with palindromic rheumatism who I found online or through social media – I steer away from those things – for some people it engulfs their life.

• I saw Arthritis Today magazine in the waiting room and had never heard of Arthritis Research UK before, so I went online. You have to beware because of the amount of doom and gloom there is on the internet, so I just looked at the facts. That’s where I found out about the possible progression to RA – it doesn’t look

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good. Basically it says to treat the attacks as and when they happen and that it’s a blessing it doesn’t cause any joint deformity. When you have a flare-up you can’t actually do anything.


I think if there’d been more information it would have helped a lot. You start thinking all these blood tests are coming back positive but your joints are fine and you start to think is it just my imagination? You get this bizarre tiredness and you automatically assume everything is down to the menopause. I was always so fit and well. Now I’m cautious – I still cycle and walk, but I used to go a long way and now my neck and foot are really sore. I’m going to have to go back to the doctor’s to get them checked out. It would be good to know that some of these anomalies are quite normal. You just want someone to believe that there is something wrong and it’s not all in your mind. Better knowledge for GPs is vital, although my current GP is very good and immediately referred me.


Basically it’s just about having more information. My GP was very good, but palindromic rheumatism is not very well known so they aren’t likely to diagnose it. It would be wrong for them to label everyone, but they should be slightly more aware, and aware of the link to RA and treat it immediately. Time’s the element.


• Change work patterns (e.g. go part-time) – I’ve decided to retire early, but otherwise I have worked as normal except when having a flare-up.

• Reduce or stop exercise – I’m still managing to cycle and walk. I miss doing quite fast walking, but my foot hurts too much. I still cycle but not as much because my neck plays up – but it doesn’t stop me.

• Change diet – they say to give up tomatoes and this, that and the other, but I have found that tomatoes don’t seem to agree with me, so I don’t eat them any more. My last flare was after having tomatoes – it may have been pure coincidence, but it makes you not want to eat them. I’m pretty healthy and not overweight.

• Give up hobbies – I used to play tennis but I tried it last year and my wrist was in such pain I thought I’d better stop doing that. I am careful what I do because the pain is unreal.

• Pace myself – the only thing I’ve found is that I used to garden for a whole day at a time, but now I’ll do it over a couple of days.

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• Paracetamol.• Anti-inflammatory drugs: ibuprofen, naproxen, tramadol. • Disease-modifying drugs: the rheumatologist wanted to put me on hydroxychloroquine, but I said I don’t like

taking tablets of any form and asked if I could I just hold back on that for the moment. I want to avoid the side-effects and cope as well as I can without it for as long as I can. The naproxen made me feel so sick. The rheumatology nurse specialist said if it progressed they’d really treat me aggressively in the early stages.

• Complementary or alternative therapies: I went to Pilates and yoga – I didn’t think they were helping, and when I was at Pilates I kept getting a sore neck and thought it might not be doing me any good, so I stopped.


They last two or three days. It comes up really suddenly and I have pain and swelling for a couple of days and a red line comes up. When the line gets really red and the swelling is at its fullest extent the pain starts to go. The pain goes but the swelling stays for four or five days. There is no other pattern.


They are really sudden – I can go to bed absolutely fine and wake up at 2am in absolute agony. It’s a burning, searing pain deep inside. The first 36 hours the painkillers don’t touch it. I just pace around – it’s the only way I can cope.


I think it’s one of those you can’t control because you don’t know when it will happen and when it does there’s absolutely nothing you can do to stop it or quicken the process. You just have to live through it.


• GP – I haven’t been back and he doesn’t know the diagnosis yet, but I think that’s because when you’re fine they can’t do anything and when you have a flare I’m inclined not to go to them because there’s nothing they can do because they’re not the experts in it.

• Rheumatologist – they’re both very good. • Family – pretty good actually.

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• Partner or spouse – as above.• Employer – I didn’t say anything for a long time, but I have told my ward manager I haven’t felt 100 per cent

for a year, and I’ve said I’ve decided to retire five years early. It will have a financial impact but I don’t want to end up with severe RA and never having had a retirement. Of course that may never happen. She will come and ask if I’m okay when I’m limping.

• Work colleagues – they don’t know.• Friends – only two of my friends know and they encourage me to be positive about the future.


Hypothyroidism – it took quite a long while to get the dose of thyroxine right. But again originally that was all put down to the menopause.


I’m staying positive – you have to. At first I thought oh no, I don’t want it to go to RA. My brother has it as well, and for my mother it was so severe, within four years she was bedridden. At the back of my mind I wonder whether my mother had this – there was a very sudden onset for her and she died within ten years, but you can’t think like that. What will be will be. My mother was really fit too.


Research into the likelihood of it progressing to something else and what to expect. Originally I thought…you get blood results that are positive and no symptoms so you get discharged and it leaves you up in the air and you think, well blood tests don’t lie – I didn’t feel secure being sent away. Rheumatologists need to start looking at other explanations so you get a diagnosis instead of just sending you away.


The need to talk to someone – until I talked to you I thought I just get on with things. These questions have made me realise this has changed my life quite significantly. Just the chance to talk to someone like this makes it all fall into place and I understand how it’s affecting me. You make adaptations and you find a new norm, which isn’t the same as that of someone else who doesn’t have this. There is absolutely no one you can talk to because no one understands this disease – they sweep it under the carpet. And when I’ve had a flare with the red marks, people won’t accept it’s a flare but say I’ve been bitten. It’s just lack of understanding. I’m fine when I know what’s going on, but not when I was discharged without a diagnosis. Once you know, you can accept it. It’s not normal to go to bed and then wake up and not be able to move. It’s just nice to know it’s a real condition. I didn’t want a label, but at least I know. I feel far more positive now, knowing it’s being taken seriously.

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A 41-year-old female managing director. UK based, had symptoms for just over a year before being diagnosed this year.


My GP.


I started getting really angry all the time and losing my temper – this is something I hardly ever do. I also had horrific headaches. I went to my GP and said there was something going on. They said it was depression and put me on a weekly visit to keep an eye on me. They offered counselling and pills. They kept putting me on different pills for my head. Then one day I woke up and I cried uncontrollably and threw all my perfume bottles at my wall in my bedroom. I caught the next plane to Cyprus to see my parents. There, I started getting odd symptoms – one-day wonders I called them, such as mouth ulcers. Three days later I went home and phoned the GP and said I was okay now. Then I went to bed and couldn’t get out of bed, I couldn’t walk at all. I thought I had the flu. I called the GP again and said I couldn’t move – I thought I was exhausted and took a day off work. I couldn’t get out of bed even to go to the toilet. I went to the GP again and said I was in a lot of pain all over my body. The GP said straight away you have reactive arthritis and you need to rest. It was swelling and it’s like an alien that takes over your body and moves around – everything is affected apart from your head. I can have mouth ulcers one day or cystitis another, or horrific shakes in one hand so I can’t hold a cup. It got hold of my body so badly I couldn’t drive or walk from the car to the front door, I couldn’t get up stairs. I had lots of tests and the GP said maybe I had rheumatoid arthritis (RA). I couldn’t go to work – I had to have a driver. I went to Cyprus for a week for the heat. My parents were so upset seeing me like that – I was like an old woman. I ended up with a terrible one-day stomach thing. It took over so I was seeing specialists in Cyprus to get to the root of it.


Exhaustion, flu, depression. I now know my autoimmune system has been damaged.


They did blood tests and my liver was high and other things were also too high. I saw a consultant back here and had a bone scan and an MRI scan.

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I’m now under a rheumatologist who said I had a chronic case of reactive arthritis – one of the worst he’d seen. Then after I’d had a bone scan he said it was inflammatory arthritis. Then I had an MRI scan and he diagnosed palindromic rheumatism.


• GP – no. • Rheumatologist – yes totally – he’s superb.• Family – no – my sister says it’s all in my head. If people don’t see it, they don’t understand. But when my

parents did see, my dad broke down. • Partner or spouse – totally – he’s so patient. And my son – he’s worried sick about me.• Work colleagues – totally – I’ve got a good support network, but I wouldn’t tell them every detail.


14 months – I’ve been really lucky. I kept pushing, or my parents made me – I couldn’t let it take over my life. I don’t have the time to wait around.


• Internet sites – I looked online and learned it moves around and can lie dormant, which is true for me. I looked up what I was entitled to, and found a factsheet for friends and family to read.

• Friends, family or work colleagues – dad told me about Arthritis Research UK and he thought getting involved in this research would be good.


• Reduce or stop exercise – I can’t swim any more unless I’m on holiday and I push myself through the pain – it causes flares in my knees and hips. I find walking difficult, but if I take all my pills I’m fine.

• Change diet – yes, but apparently it’s useless. I intend to give up smoking, though there’s no proof that it will make a difference.

• Give up hobbies – no I haven’t got any.• Pace myself – no – I can’t do that. People’s jobs depend on my business.

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• Other – I can’t wear heels anymore because it affects my ankles and Achilles heel and tendons, so I haven’t worn a pair of heels for over a year. I wear pumps and flat boots that are supportive of my ankle. I had to wear heels to a wedding, but I couldn’t walk in them. It sounds silly, but things like that are important for a businesswoman. I’ve got slippers in the office.


• Non-steroidal anti-inflammatory drugs: amitriptyline 25mg• Disease-modifying drugs: hydroxychloroquine. I’m taking what I can to try and put it into remission. You

literally want to cut an alien out of your body. It’s like I have got something living inside me. But it’s a day at a time. They put me on tramadol and that didn’t work – no painkillers hit the pain. They gave me a steroid injection, which made me worse for three days, then I went to work on the fourth. I wouldn’t have that again. I’ve told my rheumatologist I can’t rest, or be signed off sick. He phones regularly. I got another bout that was really bad so he put me on amitriptyline. It works really well and I can take it whenever I need to. It helps me sleep and keeps the pain at bay, but I try not to take it all the time. The rheumatologist saw me in between flares two months ago and said I was on stage 2 and put me on hydroxychloroquine. I’m waiting for it to take effect a month from now. I got another nasty flare when I started taking it.

• I’ve tried vitamins, herbal remedies and changing my diet, but nothing works.


I seem to have one-day attacks and I can’t work out how much time I typically have between them. I get things like earaches, gland attacks and cystitis as well as the joint problems. My symptoms appear all over the place with no pattern at all. If it’s a bad flare, my body comes down bad. I’ve had to have my rings made bigger. The pain is so excruciating, it is worse than a fracture. It feels like someone constantly sawing at your joint. And I’ll be stone cold in that area. You get extremely exhausted – you can’t even face getting dressed. But I push myself through – I want to get it out of me.


Sometimes you ignore the signs – I will have a really bad bout of diarrhoea but don’t always realise that’s a sign that a flare is coming. If I do anything that’s got a vibration, like lawn mowing, driving or vacuuming it can feel like I have Parkinson’s. I try to keep warmth on my shoulders because that’s where I get it worst – but you swell up like an elephant when it comes.

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Sometimes – but sometimes it takes complete control of you and there’s nothing you can do. I have attacks probably about ten days of every month, and that’s when I really have to fight it. I’m not a weakling. I don’t let it take hold of me – I’m not ill in my head, so I won’t give in. The effort for me to get out of bed in the mornings is huge but I force through. I have a huge desire to sleep. It’s good to know it’s not RA and is not eroding my bones. It’s just my autoimmune system and that’s important. But you just have to block it off. For my birthday I wanted to go out because it was a beautiful day, but we got to the car park and I couldn’t even walk from the car. It took me an hour to walk to the house and then I got to the step and couldn’t get up that. I find it embarrassing. I feel like I’m marginalised and don’t want people to know I’m struggling. My son and partner are the only ones who see. I don’t want to build my life around it, but sometimes I have to. I push through and then I can be fine. I avoid letting it make me cry. I just get frustrated sometimes. I blame myself for not realising I had a norovirus in the first place, which I must have worked through and caused this. I can’t even remember when that was. I’m always a fighter in everything. If it hits me on the wrong days it really gets me down. It’s like having something living in you. You can’t rest it when you’re meant to – you have to go on.


• GP – no. • Rheumatologist – I’m monitored weekly. He’s had a massive go at me to take a rest. My autoimmune system

has gone because I’m a workaholic, but he knows I can’t not work. It does cost me a lot of money to see him, but I’ve found someone who understands me and my busy lifestyle and accommodates me. I do listen to him, but he also adapts to me. I can call him at any time on my mobile and he’ll offer advice.

• Family – my son helps around the house, lifting and so on.• Partner or spouse – my partner and son are the only ones who understand how it affects me.• Work colleagues – they sometimes see the pain on my face and I’m embarrassed and try to laugh it off.


I don’t know.

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I don’t know. I hope it doesn’t deteriorate – that’s what I’m more worried about than anything else. I get very bad headaches – I’ve just had a four-day one and nothing touches them. I have no idea now whether this is going to be me or if it’s going to go. I’ll do all it takes if I can push it into remission. If I can’t I’ll get really angry and upset with myself. I’m just pinning my hopes on the hydroxychloroquine. My body seems to fight things quickly, so it doesn’t take hold. My business could be ruined if this continues. I have to be able to function, drive, be visible, support people.


If I can recommend anything to people it’s amitriptyline – there are no side-effects apart from panic attacks and it’s the best painkiller ever. When I was first taking it I had massive panic attacks when driving or in the cinema. But I have been fine on planes and the panic attacks have stopped. It should have been prescribed a long time ago, because other painkillers are absolutely useless. They don’t touch you. I think it’s really important to tell people about it. It doesn’t seem to make any difference if you’ve had injuries in the past. I’ve done a lot of research.

53-year-old male carpenter. UK based, had a range symptoms for a year before being diagnosed two years ago.


I went to A&E at my local hospital with intense shoulder pain. They put an ECG on me but dismissed it as tendonitis and gave me painkillers. Two weeks later I had a wrist attack and went to my GP, who sent me for blood tests. They gave me morphine directly into my shoulder and it heightened the pain. I never got a wink of sleep for two nights solid. They started treating me for a heart attack and I couldn’t understand why I was having one as I was so fit. It turned out one of the coronary arteries had been attacked.


Severe shoulder pain right in the joint. I could feel it coming on as a throbbing, going down the arm to the elbow via the artery. After about nine days in hospital the arthritis doctor started taking an interest. I had an agonising pain in my wrist. It was like someone hitting me with a sledgehammer and my hand became claw-like. If you’d touched me with a feather it would have been horrific. My urine smelt funny and my GP said it might be a UTI [urinary tract infection] so he gave me some antibiotics. Within the next three days I had another few attacks, which were shorter and less intense.

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Two days later I got an attack in the right side of my throat, across my windpipe. Within two hours it was a full-blown attack. It started attacking not just my joints, but also the soft tissue and I began to worry about it attacking my heart.


I had no idea because it was so random and would move from one part of me to another. It materialised in the Achilles tendon and then under my instep and round and up to the other ankle, getting more and more intense. It would last for 12 hours at a time. I lost a stone in about two months. All sorts of things go through your mind. I had a major reaction to or was poisoned by prawns – within two hours I was vomiting and had diarrhoea for seven hours. This happened twice. Then I developed conjunctivitis and had three different types of antibiotics, none of which worked. I wondered if these things were connected in some way to my eventual diagnosis of palindromic rheumatism.


The rheumatologist must have given me 100 blood tests in hospital but he really didn’t have a clue what was wrong.


My GP really didn’t have a clue – he put me down for general run-of-the-mill blood tests, which included looking for cancer. Before the blood tests came back I was taken into hospital with a suspected heart attack. When you go into hospital with chest pains they put an ECG on you, but I had no visible signs. They also take a blood test at the start, then 12 hours later. If proteins are present they deem you’ve had a heart attack. But now my rheumatologist says palindromic rheumatism can show the same things. All the heart consultants were completely confused about how I could have had one. So I don’t know if I’ve had a heart attack or not.


• GP – not at all. • Rheumatologist – not at all.• Family – yes. • Partner or spouse – definitely.• Friends – only my really close friends but I wasn’t going out much so they didn’t really know what was going

on.

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• Other – the only person who really listened was a specialist heart nurse at the hospital – she actually listened to me for over an hour and understood how anxious I was. She knew that anxiety wouldn’t do my heart any good. She actually wrote to the specialist rheumatoid nurse and got me another appointment – no one else was paying any attention.


It was relatively quick in the end once I saw the rheumatologist – something like three months. The doctor I’m under is a renowned specialist, but he tends to want to make me admit I’ll have full-blown rheumatoid arthritis (RA) and wants to make me go on methotrexate, which I don’t want to do. I don’t have RA and don’t want this being levelled at me for the rest of my life with the massive side-effects it has.


• GP – no. • Rheumatologist – no – he just wanted to put me on drugs and give me the literature for the drug and all the

side-effects that go with it, which were bloody frightening to be honest. He doesn’t seem to want to know my symptoms – he just ignores my worries and is hell-bent on getting me on methotrexate.

• Other people with palindromic rheumatism who I found online or through social media – you get a bit of hope and comfort from the Facebook site. You think oh that’s what it is, or could be. It can be frightening, but there’s a certain amount of comfort to be able to associate yourself with others. Different people seem to get different information and treatment.

• A specialist nurse explained you shouldn’t go on methotrexate if you’re susceptible to shingles or have had pneumonia – both apply to me and it’s a very toxic drug. Even my GP said I should try and go on something else as a first resort.

• Internet sites – you do all you can to find out what’s happening, but a lot of those talk about reactive arthritis, which can be a temporary thing.


More about the drugs and what they do – there are new ones coming through but they are not tried and tested. The thing that really bothers me and makes me feel sorry for a lot of people is that they are across the board diagnosed with RA and automatically put on these highly toxic drugs. It’s such a diverse disease and people don’t specialise in it. Rather than pull the drawing pin out of your foot they’ll give you something to stop it hurting. I’d like to try antibiotic therapy, which I believe works for me. I had trimethoprim for a water infection and it seems

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to help me. I had lesser attacks while taking this. And then the one across the chest that was deemed to be a heart attack, that wasn’t severe. All the other attacks are absolutely debilitating. The rheumatologist just dismissed this when I mentioned it. Six weeks before he didn’t know what was wrong, then suddenly I had to go on this drug. I would like information about other illnesses it could be and how to tackle medical people who are so, so busy and get them to listen to you. There’s always a student there, so that’s off-putting – you feel he’s talking to the student, not you. He’s very dismissive of any suggestions or anything you think might relate to the condition, and it can be so frustrating.


I really don’t know – GPs generally don’t know enough about any one subject. They just know enough to be able to do their job. There’s not enough research on palindromic rheumatism for them to be aware of it.


• Change work patterns (e.g. go part-time) – I have just started going back to work doing light duties but it’s still uncertain because I’m on steroids, which I’m going to give up. I just got asked to price up a job for three or four months’ work and I don’t feel comfortable going ahead, so I will have to turn it down.

• Reduce or stop exercise – with my so-called heart condition they say I should exercise more, but when I have attacks I can’t move so it doesn’t happen. I don’t get the swollen joints. But the rheumatologist is convinced it will go into RA.

• Move house – there’s no chance of that for financial reasons.• Change diet – yes my brother’s got an underactive thyroid and was given a triple dose of thyroxine, which

buggered his heart up. He goes by all the natural remedies instead now and his doctors are amazed at how well he’s doing. He’s advised me on diet. I was trying to see if anything was aggravating it. Within the first month of my diagnosis I cut out white bread and have been on wholegrain since then. I eat Jewish chicken soup. It’s quite widely believed that many forms of arthritis are caused by leaky gut syndrome – you get unrefined things going into your system, your immune system attacks them and this causes arthritis. If you boil a chicken carcass with the cartilage in and render it down, the enzymes are similar to our own. It retrains your immune system not to attack and stops your body attacking itself. The Americans do it in tablet form, but I am making the soup.

• Give up hobbies – I am a shooting man, but I haven’t been this year.• Pace myself – I would have done if I could.

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• Tramadol was the only painkiller that worked for me. I was loathe to take it but when I was stuck on the stairs an out-of-hours doctor suggested it because it was a non-opiate. Being on heart medication I can’t take anti-inflammatories.

• Disease-modifying drugs: hydroxycholoroquine, prednisolone. The rheumatologist wanted to put me on methatrexate but I said no – I am on a steroid (prednisolone) and am reducing the dose. My face has blown up and I’ve put some weight on. But I’ve had no attacks since I’ve been on it. I was on a quinine-based drug but I had a bad reaction to that so I had to stop – I had a rash and my throat was inflamed.

• Pain management groups/clinics – it was quite distressing in hospital and when they injected me with morphine they just had to leave me there to lie and pant with pain – I had no comfort at all.


Initially I had 15 to 20 attacks in total with a couple of weeks between, but I didn’t realise at first that’s what it was. At first you can accept it’s tendonitis, but then it becomes so intense. Each attack lasts between ten and 24 hours. After the dentist gave me the soft tissue antibiotic I had one for three days in both knees and one ankle and both wrists. I have also had it in the neck twice. It manifests at the bottom of my neck then goes diagonally to the bottom of my skull – it’s the same sort of attack but it’s very worrying when it’s your head that is being attacked. This happened 12–13 weeks ago, and it still feels wrong. I’m also getting tingling in my hand, finger and arm and that’s put down to my neck. I’d laugh at broken bones compared with this. The rheumatologist says there are a lot of heart episodes that go alongside palindromic rheumatism but it’s not really recognised. I’m sure my arteries are being attacked. My hand went stone cold and white and I had to force blood into it – this was while I was having an attack in the wrist.


Just the wrong antibiotics. It’s so random otherwise. I normally don’t get ill and being ill is all relatively new. Taking antibiotics makes the attacks milder. You can feel the build-up in the veins and then it attacks wherever it’s going to attack. Heart attacks are an annoying pressure with a little bit of pain. I think without the antibiotic I would be dead by now. Then I had the dental thing with the other antibiotic, which made me so ill.


I really don’t know until I come off the steroids – it’s up in the air.

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• GP – not really because I see a different one each time. I’ve seen 20 GPs since I got the condition. They tend not to know about palindromic rheumatism. One of them seems to be more understanding, but then he admits he doesn’t know enough to advise me so he refers me. There’s a helpline but they don’t get back to you straight away. When they do, all they want to do is get the numbers right so they can say they did respond.

• Rheumatologist – last time I saw him was six weeks ago and I was supposed to have a scan on my right elbow. I had a scan on my neck yesterday and asked about the elbow scan – they still don’t have it. Really I’ve only seen him twice since it started and the rheumatology nurse once. I really don’t have any confidence in them or the system. I feel they’re taking no notice of me. I’ve had symptoms of food poisoning and throat and eye infections and they’ve said it’s reactive arthritis – they just shrug.

• Family – I’ve had massive support from them.• Partner or spouse – yes, but they shouldn’t be the ones having to sort this out and find out about it.• Friends – I’m not one to moan about it to my friends. • Other people with palindromic rheumatism – I really don’t know any. The Facebook group is the most

support and comfort I get. • Other healthcare professionals – you feel you’re not being told anything. Every NHS hospital is overrun with

problems and they do have a helpline but when I was stuck on the stairs I rang them and it was three days before they got back to me – there’s no direct route to answers for your questions.


I’ve had a very quick nip on an artery, despite having no heart history.


I do worry it goes into full-blown RA but I am tending to think it’s reactive, judging by what I’ve read. You do start to think the experts aren’t really experts and you start to think they are just peddling drugs from certain companies – that seems to be their main concern. This so-called heart condition is a worry as well – yet I mustn’t worry if I have one. You worry that the stuff they put you on for the arthritis will react with the heart drugs.

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I’m willing to talk again in another month. If it is reactive I needn’t be treated with a severe drug that I don’t need. I have markers that can contribute to RA but so do thousands who never develop it. That’s something I’ve had to find out for myself. If I weren’t looking at the net I’d have been railroaded into taking this drug.

43-year-old female practice nurse. UK based, diagnosed within a few months of symptoms starting last year.


My employer, who is a GP, then my own GP.


I didn’t do anything about it at the time, but I had jaw pain. One of the GPs in the practice where I work said I had temporomandibular arthritis. But that settled within a week and I didn’t have anything else for months. Then I got a severe shoulder pain. I didn’t connect it with the attack on my jaw at the time. I went to my own GP who told me to take anti-inflammatories and go back in a week if it was no better. But I didn’t go back to my own GP, I just saw another doctor at work the following week. By then I had a temperature of over 38 and the pain had moved across to my other shoulder. I had blood tests that showed I had an ESR of 40 so we thought at that point it was reactive arthritis. But it continued to spread to different joints for weeks and went into my hands. There were odd days when it wasn’t as bad. My own GP also said it was reactive arthritis and to keep taking anti-inflammatories. Eventually I asked to be referred to a rheumatologist. I had more bloods done, which showed I had a positive rheumatoid factor.

What did you think might be causing your symptoms? I never doubted myself – I knew I was experiencing something strange. It was different from anything I’ve ever felt before and the speed with which it comes on is unbelievable.


Blood tests.

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Reactive arthritis.


• GP – people did accept what I was saying, but I felt that was only because of the job I’m in. My hands were swelling so they could see it, but for most people there’s nothing to show. My own GP wasn’t at all helpful at first, but I had only gone with a shoulder pain that had just started. But I knew it wasn’t just a sore shoulder and I had a temperature of 38 – that’s why I didn’t go back to her a week later. When I went the next time I saw a different GP who has been very supportive. S/he knew about PR but didn’t know a lot about it.

• Rheumatologist – on my first appointment, he said it was palindromic rheumatism. I had heard of it – one of the GPs at work had mentioned it.

• Family – they did when they could see me in a great deal of pain, but I don’t think really they do understand – they are very supportive, but they can’t imagine how much it’s affected me.

• Partner or spouse – as above.• Work colleagues – I think initially they did because I went off sick and am not usually ill – they could see

something was very different in the way I was acting. I think that’s partly because they are GPs – it’s such a bonus when they can see the flare-ups. My own never has seen a flare-up.

• Friends – I would say yes, when I was having a particularly bad flare-up because they could see it. But when it’s in my shoulder you can’t see it, so people don’t believe you as much.


Just a few months.


• GP – no.• Rheumatologist – I have a family history of RA and she told me it moved from joint to joint.• Internet sites – I started looking into it and did lots of internet searches. I found quite a lot – I found blogs

very useful where people tell their own stories. I also found the Arthritis Research UK website very useful.

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The only thing I can think of is that if I hadn’t known the name I wouldn’t have been able to find information – Googling joint pain and so on didn’t lead me to palindromic rheumatism. It was only once I had the name that I found it and it massively made sense. There needs to be greater awareness among people that it exists and what would help. When you’re looking at the symptoms they are very similar to reactive arthritis, so all the information was leading me to that.


• Change work patterns (e.g. go part-time) – I have changed my working hours. When it first started I had a lot of time off sick. I had four weeks and used up some of my annual leave. I’ve gone back to work on reduced hours.

• Reduce or stop exercise – I used to do a lot of walking, which I struggle with at the moment. I also used to cycle but I can’t do that now. The biggest worry is the fear that it will bring a flare on, and also I just get so tired and fatigued. Now when I take the dog just for a walk around the block I feel I’ve walked ten miles. But the biggest thing is the fear of bringing on an attack.

• Give up hobbies – I haven’t given any up, but it’s taken over my life because I don’t do as much as I used to. • Pace myself – yes – I’m finding it very difficult to plan ahead because I never know when it will flare up. I’m

very reluctant to plan anything. I decided not to go on holiday this year because of it.


• Paracetamol. • Paracetamol/codeine. • Non-steroidal anti-inflammatory drugs: ibuprofen, but the pain didn’t go away. • Tramadol helped, but I couldn’t go to work. • Disease-modifying drugs: hydroxycholoroquine – I started this straight away, and have been on it about

seven weeks. I think it’s making a massive difference. I tolerate it quite well – I get quite a lot of headaches and a little nauseous, but nothing major. I feel as though it’s making a big difference to my life already – I’ve just had two major flares in the last few weeks, and they didn’t last as long. But I did have a steroid injection. The rheumatologist wanted me to start on methotrexate straight away, but I’ve declined it.


They vary – from December to the end of January when it all started I only had three or four days without flares. Then after that it was at least weekly. The shortest they last for is 24 hours and the longest are about ten days.

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I couldn’t eat my Christmas dinner, because I couldn’t cut things up or hold them. When my shoulder started I had a little niggle and then within an hour and a half I couldn’t move it.


Doing something strenuous does bring on a flare. I haven’t noticed any particular pattern – it just comes very quickly in various parts of my body. There is no clue in advance. Whichever joint it’s coming in I’ll get a different feeling in there and within an hour it’s swollen red and painful. I have warm baths, which help a little bit, but apart from that it’s just about not using the joint when it flares because it’s so painful. I tend to just stay at home and wait for it to pass.


No – I feel as though it’s controlling me. I do feel better, since I’ve been on the hydroxychloroquine, but I’m still very conscious of it and wary of doing things, which I hope will go away. But at the moment it’s all a bit fresh.


• GP – yes. • Rheumatologist – I found him very nice, but next time I go I will see one of the rheumatology nurses and I

think they will be more supportive. There is a rheumatology helpline number to contact them if I need help. • Family – yes. • Partner or spouse – I get lot of support from my partner.• Employer – yes – they keep an eye on things. Last Friday I had a bad day and one of the GPs helped with my

workload.• Friends – I would say I would get support from them if I needed it, but haven’t been seeing them much

because I haven’t been in the mood and don’t want to make plans that I have to cancel. • Other – it’s quite a lonely thing not knowing anyone else who has it – I do find that difficult. My partner has

been really good, he’s been reading about it so he has a good understanding. But you don’t look like you’re ill so it’s difficult for people to really appreciate how you feel. I have an aunty who has osteoarthritis and she’s the one I find it easiest to talk to – she has an understanding, even though it’s different.

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I got a copy of the rheumatologist’s letter and it does say the palindromic rheumatism is more than likely to be the beginnings of RA. That’s not a happy thought. He’s probably basing that on my strong family history of RA.


It’s something I find difficult to think about at the minute because I don’t know how I’m going to be able to manage holding down my job. I’m reducing my hours by using my annual leave, but I’m a single parent with children and I worry very much about how I’m going to provide for them. I live in hope that it will come under control and I can carry on doing everything as normal. I wonder if I’ve done too much reading and you tend to pick out the bad things. It’s going to be a lifelong thing, even if it’s brought under control. I’ve always been really independent and I don’t feel good having to get help with shopping, etc., relying on others. My children are getting older but I’ve raised them on my own and looked after my dad – I’m just finding not being able to do things so difficult.


Everything I’m reading seems to be that they treat it similarly to RA – it would be useful for it to be seen as a disease on its own and for there to be research on whether there is a better form of treatment for it. I really, really don’t want to take methotrexate – is it really necessary in PR? I’d like to see research on treatments specifically for this.


The fatigue is particularly hard to deal with. During a flare I put it down to the fact that I don’t sleep, but in between I feel so tired. Everything is so difficult, and not just because of the flares. You just feel like you’re wading through mud. I get it after a flare but not all the time. It’s real exhaustion, your limbs feeling heavy, like your body weighs 20 more stone than it does and everything’s too hard to do. I find that very hard and people don’t understand that aspect of it. They just think you’re fed up or depressed, but it’s nothing like that. It’s just utter tiredness. It’s difficult to cope with because I think people think I’m being lazy, but I’m not.

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42-year-old female disaster recovery specialist. UK based, diagnosed six years ago after six weeks of symptoms.


My GP – they originally diagnosed me with rheumatoid arthritis (RA) in 2003, but with hindsight I think I’ve had palindromic rheumatism as long as that.


It was really intense pain that moved around my body in a cyclic, fairly routine way. One joint would be sore one day, then another the next. But when I started getting full-on flares it was only in certain joints.


I thought it was my RA – I had had these flares before, but they were getting more intense and I had to go to A&E. I had what I now know was a palindromic rheumatism flare-up on a flight back from Mauritius. I described it to my consultant and he knew straight away what it was. I hadn’t heard of palindromic rheumatism.


I didn’t have to have tests – my rheumatologist knew from my description what I had.


• GP – I didn’t see him about this.• Rheumatologist – yes. • Family – to be honest I tended not to tell my parents.• Partner or spouse – my partner understood because he saw how it affected me.• Work colleagues – they were fine – they were very supportive and encouraged me to take time off. I’m not

very good at articulating how painful things are, but my other half is, and because we work in the same place, he was happy to explain how it was for me.

• Friends – I tend not to talk about it because I don’t want pity and that’s what you seem to get from people.

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About six weeks on my next visit to the rheumatologist. I see him privately, so had I not had an appointment coming up I would have made one to see him.


Internet sites – I just Googled it and found one particular website that was helpful. What further information would you like to help you manage your symptoms?

The bane of people’s lives is what will alleviate our symptoms, and that’s what I find most useful about the Facebook forum. I would like to know all the different methods, with an explanation that it’s different for everyone – you have to find your own method. The group means I don’t feel quite so alone. When I’m at the doctor’s I read Arthritis Today magazine and, although it’s not always relevant, reading things like that is interesting – you find some bizarre ways to cope and it’s good to know you’re not alone.


If your GP doesn’t believe you or hasn’t heard of it, it can take a long time to get referred. When I was diagnosed with RA finally, it took ages to be referred and I was tested for all sorts, including gout. I think they thought it was in my head. There needs to be better education for the medical community.


• Give up work – no sadly not. • Change work patterns (e.g. go part-time) – I’m lucky enough to work for a large employer with a flexible

working policy so I now do some days at home and some in the office. The nature of what I do makes this possible.

• Change plans for having a family – yes, I haven’t even thought about trying, partly because of the medication I’m on and partly because I wouldn’t be able to pick up a child.

• Reduce or stop exercise – yes, but I still do some. I used to go to the gym far too much and now I don’t because it did have a negative effect.

• Give up hobbies – I have had to reduce the amount of time at the gym and I can’t walk far so I have to be organised in what I do.

• Pace myself – it’s one of those things – I would quite happily spend a day shopping or walking, but my feet just can’t take it, so I have to plan what I can and can’t do.

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Sulfasalazine, tramadol and hydroxychloroquine sulphate – the hydroxychloroquine was given specifically for palindromic rheumatism. While I’ve been on that I have only had one flare this year and it was 18 months since I’d had one before that. But I do believe it’s the balance and adjustments we’ve made to our lifestyle that keeps things under control.


They last six to seven hours and are usually at night. I feel them coming on in the early hours. I may have had slight symptoms the day before, but they tend not to be strong enough for me to realise. It’s like a cramp building – a bit like a labour pain I imagine. They get more and more intense, then peak, then tail off until they gradually disappear. Once the pains have gone away, I can’t put any weight on that joint for the next couple of days because it hurts. I just can’t do it.


Negative stress definitely brings flares on. If I do certain things, such as lifting a child, there’s a direct link to a flare. We went bowling one day and I had a flare-up in my wrist the next day. For me warm baths help – I just put my feet in the bath. It doesn’t take the pain away, but makes it a bit less intense. As soon as I take my foot out of the bath again the pain comes back. I got some stuff in the States that helps with my wrists – it’s an ice-cold gel, but better than the sort we have here. It’s a cold menthol feeling and it really helps but you can’t get it here – I just buy it when I go on holiday.


I would like to think so.


• GP – no but he would if I asked – however, I’m not sure what he could give me.• Rheumatologist – yes if I ask he’ll help – he listens. • Family – yes. • Partner or spouse – yes. • Employer – yes very supportive.

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• Work colleagues – my team is all based in England and I’m in Scotland, so I’m the only one in my department. But my colleagues would help if I asked – however, I just get on with it.

• Friends – yes they would support me and understand if I was to bore them with it.• Other people with palindromic rheumatism – yes definitely, there are loads of people on the forum who are

happy to comment and share their thoughts, but some of them are a bit too extreme for my liking. Do you have any other conditions that have developed since or alongside your diagnosis of palindromic rheumatism?

I was diagnosed with RA in 2003.


The same as anybody – I’m not particularly worried from a palindromic rheumatism point of view. I don’t really have any thoughts on it.


To understand what it is and why it happens – medication and coping methods, I guess.

37-year-old female medical secretary. UK based. Had symptoms for three years before being diagnosed four years ago.


My GP – but not much happened. The pain had gone again by then, so they said they would do some blood tests and see what happened. That went on for about a year. I kept going back and saying I still had pain. After a year I was referred to a rheumatologist.


I had quite fierce pain in my ankle when I was on a day trip to the seaside. I was walking along the prom and I saw older people using Zimmer frames were overtaking me. I thought this wasn’t right. It was the pain and the tiredness that prompted me to go to my GP. There had been hints beforehand with pains and a niggly ankle, but up to that point it was not particularly noticeable. Just with hindsight you see it was brewing.


I didn’t know at all – there was no family history of any joint problems. The only thing I could think was that it could be rheumatoid arthritis (RA) but the tests were negative, so I thought it could be osteoarthritis. I thought

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I was a bit young for that, so I had no idea at all. It was very worrying for that year when I was waiting for a diagnosis.


Blood tests.


My blood tests were saying there were signs of inflammation, but my rheumatoid factor was negative so they didn’t really know what to put it down to.


• GP – sometimes I thought they believed me, and sometimes I thought they didn’t, because my joints don’t swell or redden much. There’s not much to show, just me saying I’m in pain, and when the tests didn’t show anything specific I thought perhaps it was in my mind. It’s so much easier when it is something visible.

• Rheumatologist – to start with they weren’t sure what it was so I had a whole new set of blood tests. I’ve got slightly hypermobile joints so they thought it could be that. I had physio to strengthen my joints but that didn’t help. I had to keep pushing and going back and saying the pain is still here and I’m really tired. It was a bit of a fight to get taken seriously.


It took about two years to diagnose it, and that was only after they prescribed me steroids. I felt better than I had in years and that told them it was an inflammatory condition, and I was diagnosed. I hadn’t heard of it and didn’t have a clue. They didn’t give me any information. On getting your diagnosis, where did you get or find information about palindromic rheumatism?

• GP – they couldn’t help. We have a new GP in the practice where I work and she saw me taking painkillers and asked what the problem was. I told her it was palindromic rheumatism and she said, ‘What’s that?’ I had to explain it to her.

• Rheumatologist – they didn’t give me any information. I was left to come home and go online to find out what on earth it was.

• Internet sites – I went online but I didn’t find much.

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To know that there is treatment when you find the right one, that you don’t always have to suffer and there is light at the end of the tunnel. When I was first diagnosed I thought I’d never get my life back. It would have been good to have some indication of what to expect.


It’s very hard to keep going back and for me working in the practice where I’m a patient was really awkward. I kept having to say this isn’t right. And at a time when you’re ill, you don’t feel like standing up for yourself.


• Give up work – no, but I did have to not apply for a job I wanted because I thought I wouldn’t be able to cope with it. Before that I would have gone straight for it.

• Change work patterns (e.g. go part-time) – no, but I’m only part-time anyway.• Change plans for having a family – I never really wanted one.• Reduce or stop exercise – I used to do a lot of walking, but I do less than I used to now. I try to do it, but I

can only do it during my good periods. In the back of my mind I always wonder if I should be doing it at all – will it make me worse?

• Move house – no but I have got different taps on the kitchen sink. • Change diet – I’ve tried all sorts of things diet-wise. I did cut out several things, but none made any

difference. • Give up hobbies – I can’t always do my jewellery making – I haven’t given it up but I can only do it when my

hands aren’t too stiff.• Pace myself – I’m still trying to learn to do this – I find it the hardest thing. When I’m feeling okay I want to

go for it and even when I’m not I want to do more than I can actually do.


• Paracetamol.• Paracetamol/codeine.

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• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac – they take the edge off the pain but when it’s bad nothing really helps. I had to stop diclofenac because it was aggravating my stomach.

• Disease-modifying drugs: hydroxycholoroquine, methotrexate, sulfasalazine – I started with hydroxychloroquine, then switched to sulfasalazine, then methotrexate. I’m now on combined methotrexate and hydroxychloroquine, and so far it’s so good. I’m hoping this might be a winning combination. I’ve had no side-effects as yet but it’s still early days. However, it seems good in terms of controlling my flares.

• Complementary or alternative therapies – I have tried vitamin D, glucosamine, rosehip, something out of a magazine – none had any impact.

• Pacing myself – I’m learning how to do this.


My flares are mainly in my ankles so I can predict that will be where they will start, but then they can jump into my wrists, fingers or elbows. They tend to go on for a few weeks at a time. It varies from a couple of days between attacks to two months without one. But I can’t detect a pattern. I’ve kept a diary, recording things like the weather, activity, food, etc – there’s no pattern at all.


Heat helps – if I put a heat patch onto my joint it can help quite a bit. So can going to bed, snuggling down under a warm duvet.


No, I feel it’s got control of me really.


• GP – initially no, but I’ve got a different one now and I do feel she’s more supportive. • Rheumatologist – now I’ve got a diagnosis she’s more supportive as well. I think they understand the pain

side of it, but not the tiredness and how that affects your life. • Family and partner – they do most of the time, but like with any family they do get fed up when I’m feeling

bad and I’m grumpy.

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• Employer – they are very good – they understand when I have to have time off work. • Work colleagues – yes they are supportive. A few think it’s just a bit of pain, but most do get it. • Friends – they are quite good. They do find it frustrating when I can’t do things with them, but they do

understand.


No.


At the moment I’m hoping it’s going to be a lot better than it has been. I do feel I’ve turned a corner and hope I can get my symptoms under control and get my life back on track – that’s what I’m looking forward to.


I would like more understanding about who gets it – is there any factor that triggers it?


I think just really from my point of view a lot of the emphasis is on the pain, and it’s bad, but it’s the tiredness and not being able to do things that I find the worst – people tend to overlook that side of it. People say they are tired, but it’s not the same. You get to the stage where you can hardly lift your hand to do anything. They don’t get that. You do feel so alone sometimes. I did a search on the database at our practice and I’m the only patient who has it.

64-year-old male retired worker in heavy industry. UK based but diagnosed in Australia 19 years ago after having symptoms for one year.


My GP – I asked for a blood test and it came back with a sky-high inflammatory index. With a very long face, he told me it was rheumatoid arthritis (RA) and that there was no doubt. He said he’d send me to the best rheumatologist in the area. I worked in heavy industry and could no longer work.

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I had swollen fingers and was unable to lift my hands away from my sides and upwards. It was like carpal tunnel of the shoulder – a bit like a frozen shoulder.


I thought I might have pulled a muscle, but the pain was terrible.

When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? Blood tests.


The rheumatologist said straight away what it was. I had never heard of it.


• Rheumatologist – in Australia there are lots of rheumatologists per head so it was easy to see one. He said people get a lot of pain with this, so if you’re in trouble in future, ring whenever you need me and you can turn up and I’ll see you that day.

• Other – I’d been getting heaps of work but I went from that to nothing because I couldn’t work. I went to the bottom of the heap because I kept being ill.


It just took a month or so – it was really quick.


• GP – my current GPs still think it’s RA, though no one has ever told me so officially. They say that because my hands are damaged it is RA. I’ve probably progressed, but just in my tendons where it started at the first.

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• Rheumatologist – he was excellent and did thorough examinations. He injected my elbows, wrists and ankles all at once with steroids.


The GP doesn’t have to diagnose – all they have to do is realise you have some sort of inflammatory disease. You only go back to your GP if you’re not happy with your consultant. The service needs to be streamlined.


• Give up work – yes.• Reduce or stop exercise – I do what I can. I have huge remissions, so I think it is still palindromic rheumatism,

not RA, but then it comes back with a vengeance.• Change diet – I did try, but nothing made any difference. There’s no evidence that it’s affected by these

things.


• Paracetamol.• Paracetamol/codeine.• Non-steroidal anti-inflammatory drugs: naproxen.• Disease-modifying drugs (DMARDs): hydroxychloroquine, methotrexate and sulfasalazine.• Steroid injections – the pain of the injection is nothing to the pain they relieve.


You do get some periods of relief. Currently I get 70 per cent pain and 30 per cent remission. What they forget is the DMARDs don’t stop the flares in their tracks. The only thing that does is cortisone, but that’s a risk to the tendons. To control it you have to use the drugs. For people my age the horse has bolted – we want the relief and to get back our lives. I’d like to live my life, even if it is ten years shorter. I’m more interested in my length of quality life, not a long life without quality.


There’s no pattern and I can’t feel a change coming on. It doesn’t always swell up very big. There needs to be some standardised way of getting blood test results quickly.

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Not really – when it’s in flare-up it’s not being well managed. The medics aren’t proactive enough – they do too little too late and do no preventative work. DMARDs do reduce the severity and frequency, but they don’t stop them. But when it goes away it’s as if there’s nothing wrong – people don’t believe I’ve got anything. I don’t blame them, because I have no disfigurement.


• GP – they understand but they can’t do much. • Rheumatologist – if you get a good one you don’t need anyone else, but there are bad ones too who are

set in their ideas and very inflexible, which is a big no-no in a consultant. They should be working to fit in with patients’ needs and wishes instead of just following what they were trained to do. Sometimes there’s a blur between personal preference and clinical reasons for decisions. You also need some reassurance. They could start with the bad stuff and end with the good, like when we were kids. They could do with a hell of a lot of people skills training. You think if you can’t cope with people, stay out of it and let the nurses do the interacting. But they won’t allow the nurse to do more than the basics. You can feel the vibes in the room – they won’t let you talk and then you’re shuttled out. Some of the issues are not the medical stuff, but the attitudes and behaviour and power relationships and how people want to keep you in your place as a patient.

• Family – they are just starting to really understand. People just think it’s arthritis and it’s a bit complicated. People’s attention span is too short. They’ve almost stopped asking me because they find it all a bit confusing. They are not aware of all the forms of arthritis there are and they can’t be bothered to read the literature.

• Other healthcare professionals – rheumatology nurses do all the work but don’t have any say. We need more of these trained up to meet the demand.


Last year I got pericarditis, vasculitis and an increase in rheumatic disease – all of these can be caused by methotrexate. I get depression, tiredness and drowsiness. When I’m on drugs I tend to get cold sores and mouth ulcers often. Injections do the job better, but just because I’ve had one bad reaction of allergic vasculitis I can’t have them. Pityrosporum is a rash that you can get as a result of a lowered immune system, like dermatitis.


Me getting quite angry quite soon if they don’t get their royal fingers out and sort it out. The situation

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is that all the GPs can do is refer, when in actual fact if things go pear-shaped they should have the right to have more say. The law is that the GP looks after your day-to-day care and refers you for specialist advice. When that goes wrong, you go back to the GP, but the consultant can pull rank and the GP can’t speak to them on your behalf – they can’t query any decisions. One rheumatology nurse said how many rheumatology GPs are there, but I still think they have a right to their opinion. It’s passive aggressive. You eventually want to react. My number one hate is when they do it over the phone – there’s no record, no proof. It’s the down side of using the phone to save resources, but it is open to some forms of abuse. It’s one of the risks you run when you rely on phones. You could just record the calls and use software to screen out bad language.

They should nationalise the lotteries and get the funding together for this sort of research. Those who are using services should have to pay more. Things that are expensive, like the new drugs, there should be an option for patients with a bit of cash to be allowed to offset the cost of some of that if the NHS thinks it’s too expensive. Why don’t they buy it in bulk and make it available to those who can pay a bit? It might allow those who can’t afford to pay to have access to these drugs too. The public will wear it if it’s done gently.

My kids have offered to have me back in Australia, but at the moment it’s not practical as they are so far from the nearest rheumatologist there.


Research on treatments. It’s a very difficult thing to diagnose and I’m proud to say my rheumatologist was able to spot it so quickly. It would be helpful if they could find out when it changes to RA, what might trigger that, and whether people can have palindromic rheumatism and RA at the same time. I think I still have palindromic rheumatism in some parts of my body, and some rheumatoid damage, but not RA. The worry is it’s never going to attract much funding if there are so few people who have it. But the impact for those people is garbage.

The whole way disability is awarded needs to be researched and changed – in the UK the patient is asked if they can do things. In Australia, none of this happens. You just get a claim form. The GP fills it in and says whether or not you should qualify for benefits and for how long. It says whether the condition prevents the person from doing the employment for which they are currently trained or could feasibly be trained. If the GP says that’s the case, then there’s no argument. That means the claimant can’t be fraudulent and it speeds up the process and is fair. There is a sample form on the Australian .gov website.

After about eight years when I was still in Australia, my palindromic rheumatism went into remission. I had a handful of steroid injections for emergencies, but then I ran out when I moved here. Over the last five or six years they have tried everything to keep me off steroids. Professor David Grennan

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wrote a textbook about this. His view is that oral prednisolone can’t be used for long because it’s taken into the blood stream, so it’s not as effective in the joints and leads to a moon face, etc. Whereas injections into the joints can be done several times a year without causing a problem. I don’t feel I’m given the choice. Professor John Irwin also speaks at rheumatology conferences and says the same. It’s left to the discretion of the individual trust or department – NICE guidelines are not applicable – it’s pot-luck which you get. There is so much stress involved, and I don’t want to go down the litigious road. Would it really get me anywhere? The law can only give you money. It can’t make them treat you differently. You’d have to prove the way they managed the disease caused your loss of income. It’s not a black and white neglect thing. That’s how rheumatologists have got everyone where they have. The laws need to be different. You need to be able to choose your rheumatologist. It’s not easy and it’s very time consuming – it’s very unfair on people who are working. Services could be more integrated instead of sending you back to your GP all the time, who can’t do anything anyway. There are too many people in the mix and it’s all wasting money. We need more people on higher salaries with less to do, so they do it better and get penalised if they keep getting it wrong. The NHS needs overhauling. It’s very much a political issue as well as a medical one. It needs to go to parliament as well so the two halves can work together and agree to adopt a national procedure.


It stayed in remission for quite a while when I first came to the UK, and then there was a bit of a flare-up. I went to my GP, who said he’d seen worse people than me and thought it was mild. Within 18 months it had flared up really badly and by then another GP started to give me joint injections and was happy to do that. I think there’s a protocol that prohibits GPs from injecting any more than roughly half the amount rheumatologists can use in any one place. Every time I asked the GP why there was a discrepancy in the amount he used, he said he didn’t want to go into it. I am assuming the government is keeping a lid on it. That’s all very well, but I wasn’t able to get a rheumatologist for some time, and at that stage I think GPs should be allowed to do it when you can’t get a rheumatologist. I went for two years without the injections, taking painkillers like there’s no tomorrow. That’s wrong on all counts. I couldn’t see a rheumatologist because she was off sick, but I couldn’t get the treatment I knew would help from my GP. Then I moved and there was no one available in the next place I went to for nearly three years. Effectively the GPs and nurses were looking after it between them. One refused to ever use injectable prednisolone, but the nurses agreed to it behind her back as other rheumatologists are okay with it. I’ve known people have their medication confiscated.

I’ve met some fantastic, lovely caring people along the way – it’s not all anger. For courtesy, respect, kindness, the whole NHS scores 90 per cent, but at the top end, where it really matters, it’s not good at all. And that can have such an impact. But on the other hand, some halos should be polished. My experience is very chequered from way beyond what you would expect anyone to do, for very little

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money, to really bad at the top.

This is a massive life-changing thing. For people in the benefits section – you can imagine how difficult it is to make a claim when they can’t see anything wrong. And the blue badge [disabled parking sticker] – people glare at you when you use it. A lot of people are being victimised who are guilty of nothing – there are probably a few scroungers, but it’s not everyone.

38-year-old female shop assistant. UK based, experienced symptoms for one year before diagnosis two years ago.


• NHS walk-in centre.• GP.


I had a swelling in my wrist. It was not painful so I strapped it up – it felt like it needed to be kept still. It settled down and then came back. Looking back, once I found out I’d got palindromic rheumatism I remembered I’d had shingles the year before. I’d moved closer to home to help my parents who have osteoarthritis, and at that time I was getting electric shock-type feelings down my hand. Now I feel that might have been linked.


At first, I thought it was probably just a wrist sprain. I had similar pains in my ankle and lower back – I thought it might be osteoarthritis starting up in all these places. I began to wonder if I was imagining it, because it moved from joint to joint and I’d be limping with one leg in the morning and the other in the afternoon – I thought people must think I was faking. I did wonder sometimes if it was all in the mind.

When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? After the walk-in centre I went to my GP (not my usual one), who thought it was RSI and told me to take anti-inflammatories. Later, when I saw my own GP, he said I can tell you now it’s not RSI but arthritis. We just need to find out which form of arthritis. He put me in straight away for blood tests and x-rays, which all came back negative. I had three rounds of tests all in all before getting the diagnosis.

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My GPs thought it was arthritis, RSI or a sprain. I have some friends who have lupus and they recognised some of the symptoms. That was easier for me to think about because I knew about it and knew people with it. Someone else suggested MS. All sorts of things were mentioned. My step-mum said it was arthritis, and hoped it was not RA as her mother had had that. That’s when I started looking online and checking out the symptoms. One of the assistant managers at work said she’d had viral arthritis and was off for a year and then it had gone completely.


• GP – he was very understanding. He even said he likes a good mystery and was determined to get to the bottom of it so I knew he wouldn’t give up – in early conversations he said it could even be one of these rare forms like palindromic. Other doctors at the surgery haven’t heard about it. They have a lot of trainees and if I’m going for something routine he’s encouraged me to see them so I can mention it and they can find out more about it.

• Rheumatologist – that’s another interesting one. When I went to see him the GP had already put in a note saying it might be palindromic rheumatism. There was a trainee rheumatologist sitting in, who said his first impressions were palindromic rheumatism or gout, but he admitted that was because of what the GP had said.

• Family – with arthritis they had a good understanding, but they are more used to osteoarthritis and didn’t understand the flares and fatigue elements of palindromic rheumatism.

• Work colleagues – they are basically completely split. Some were brilliant and saw me close to tears with the pain. They told me to sit down and rest, and said they were better off without me struggling on. Another said if you can’t do your job properly you shouldn’t be here.

• Friends – before the diagnosis they were quite supportive, but some have drifted away since. They started to get fed up with me saying I couldn’t go out, being too tired, not agreeing to things too far in advance or changing plans at the last minute because I didn’t feel up to it. But my friends with lupus completely understand as they have similar problems.


Two years.

On getting your diagnosis, where did you get or find information about palindromic rheumatism? • GP – no.

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• Rheumatologist – he said I was managing fairly well so to carry on as I was. I had been prescribed diclofenac already. I realised I should pace myself and listen to my body and work out over time what works best.

• Other people with palindromic rheumatism who I found online or through social media – I did find a group on Facebook and joined it and got some support from them – The Palindromic Rheumatism Group.

• Internet sites – I can’t remember all the sites I looked at, but Arthritis Research UK was one – whichever came up I checked out if it looked well written.


It’s hard to say, because people react to different things differently. You need information about pacing yourself and how to do that – not rushing to get things done and suffering afterwards. The Facebook group provides brilliant support. You can say I’ve just got this symptom, I wonder if it’s linked, does anyone else have it? How do you cope? The worst thing for me was being tired, not being able to sleep, then wanting to yawn and having too much pain to be able to do that. I had to take diclofenac with food but I couldn’t eat because of the pain. The Facebook group suggested cold milk, to take down the inflammation. I saw my doctor about something else and mentioned that my knee was painful during cold weather. He gave me a great tip for very cheap support. You cut the toe off a sock and pull it up over your knee. It stretches, providing light support and keeping the joint warm. I shared that on Facebook.


• Change work patterns (e.g. go part-time) – I work in a convenience store and we all do a bit of everything, but I found working on the tills with repetitive movement made my wrists flare up. Now I just do tills when there’s a queue. I gradually got all my hours closer to being more standardised through the week, to help me have a better sleep pattern.

• Reduce or stop exercise – I used to love scrambling and hiking – now I can just about manage a gentle walk in nice weather. I’m still planning to walk the entire south west coast path some time though.

• Change diet – no, I don’t think much about what I’m eating anyway. • Pace myself – yes, that’s really important. • Other – I do odd charity things where we dress up as pirates and we’ve changed my character to being a

pirate with scurvy to teach kids to eat fruit and veg.


• Paracetamol – I tried this but it was not effective on its own.

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• Paracetamol/codeine – I do take this from time to time but it doesn’t agree with me, so it’s a last resort if nothing else is keeping the pain down enough for me to sleep. I’m not sure if it relieves the pain or just knocks me out. When I know I need that, I know I have to go home and take a break from work.

• Non-steroidal anti-inflammatory drugs (NSAIDs): ibuprofen, diclofenac, naproxen – I took ibuprofen at first but it didn’t work too well, I tried naproxen once but it made me feel dizzy, so I went on diclofenac, which is fairly good for mild and moderate flares. I can take it and carry on working, no problem. It helps towards the stronger flares, but with those I have to rest the joints as well. The rheumatologist said there were other things they could try if the NSAIDs didn’t work, but to forget about them for now, especially at my age.

• Pacing myself – this is the big thing. I’m still adjusting. I am off work sick now for the first time in seven months because a couple of weeks ago when I was starting to get a flare, we were short-staffed and I offered to stay late. I worked harder, then carried on. The flare got worse and worse, so that was my big mistake. I can’t really tell how bad a flare is going to be. But if it’s in more than one joint I know it’s likely to be a bad one.

• Talking therapies – no, just chatting with friends who have lupus and the Facebook group.• Other – a friend has been trying to teach me to relax better. We go to a beach where there’s no phone signal

so all I can do is lie there and relax. That did help, especially when I could feel a flare coming on – it might not develop into a full flare but just be there in the background.


It varies completely – at times I feel I’ve always got pain somewhere. During cold weather there is always something hurting. At other times I can go without a flare for so long that when I get one it can be a shock all of a sudden.


Overstretching myself, overusing a joint and repetitive actions bring them on. One that gives me a bit of a break is that if there’s a cold going round at work I’ll have a day feeling a bit sniffly – I don’t get a full cold but during the week when everyone else is fighting off the cold I am flare-free. It’s as if my immune system is attacking the cold, not me. So I’ve got to the stage where I want people’s colds.


To a degree. I don’t think it’s something I could ever get full control of. I know when I need to just stop for a while and let my body recover or just plod on a little bit more slowly. I have no control over when the flares are suddenly going to strike. As time goes on I’m learning my body better and listening to

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it better. It’s about knowing when to stop and how long for. I have made big adjustments in my life to accommodate it.


• GP – yes.• Rheumatologist – I’ve only seen him twice and my GP has taken over my care.• Family – sort of, up to their level of understanding – this is completely different from their osteoarthritis

though.• Employer – yes, I get an arthritis support glove, which they buy for me.• Work colleagues – some, but you will always get a few in any workplace that don’t. • Friends – some are very supportive, some have drifted away. If they don’t understand what I’m going

through, they ask.• Other people with palindromic rheumatism – I get a lot of support via Facebook. Someone commented

that it’s great that it’s a worldwide group. When you’re kept awake in the night by the pain, you can be sure someone is always there.


No – there was some concern about dry eyes and SjÖgren’s syndrome, but they looked at my eyes and it all settled down so there are no problems.

Is there anything else about your palindromic rheumatism story that you’d like to share? [added by email post-interview]

I thought it would be worth letting you know about an incident at work today that triggered pain in my joints, and the ‘cure’ we worked out for it. It started with a (not very understanding) supervisor asking me to do a stint on the till. The other supervisors try to avoid putting me on the till as they know it causes me problems. After a short while I could feel my joints starting to ache and stiffen, and it got me wondering why that particular task, which involves repetitive, but small, movements caused problems, when my normal duties – which also involve fairly repetitive movements – don’t seem to cause any pain if I don’t have a pre-existing flare. After an hour of the small, repetitive movements the pain got too much, and another supervisor found someone to take over from me and took me to the canteen to sit, rest, and have a cuppa. Just sitting down for a few seconds was uncomfortable for me, and I felt I had to stand up and move. The supervisor and I started talking about the differences in the task I’d been doing, and what I’d normally be doing with no problems, and worked out the cause was probably not enough range of motion. Cue ‘Ministry of Silly Walks’ moment! We spent about 15–20mins of exaggerated movements involving as many of my joints as possible, and the

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pain in my joints eased. Where my joints had been hurting so much from small movements it is probably the last thing I would have thought of doing if I hadn’t had that conversation, but it worked! I just wish I could understand why small movements cause more pain than large movements.

While I was at work yesterday a younger colleague said about how she has never had to take any time off work sick, as she never gets colds, stomach bugs, etc., and I told her to make the most of it because I used to be the same. Then I started thinking – if my PR is caused by an over-active immune system, could it be that my previously ‘just’ strong immune system was a sign I could be more prone to develop something like this? On the Facebook group I told you about, I asked if anyone else had always had a ‘strong’ immune system (prior to their palindromic rheumatism diagnosis) and the vast majority said they did. In fact I think only one person said theirs was normal previously. I have also discovered that I have had another autoimmune disease for as long as anyone can remember. I always suffered with a rash in reaction to sunlight, although it took until I was 16 before I was diagnosed with Polymorphic Light Eruption. I was just told then that it was an allergic-type reaction to UVA light. It was only a couple of days ago that I read that it is considered an autoimmune disease. I hope this information helps with the research.

50-year-old female GP. UK based, diagnosed two years ago within a few months of first experiencing symptoms.


My GP.


Basically I’m normally fit and was doing jazzercise. You use big elastic bands and I got a painful hip a couple of days after the class. It went away, then it went into the other hip and then into my shoulder. It was like a nerve entrapment pain and my joints were red, hot and swollen. Then it went into my hands, knee and ankle. It all happened in the space of a month – it seemed to flare up really badly in the last two weeks of that month. The pain came and went and was never in the same place for more than a day. My husband and I are GPs, and we thought it was reactive arthritis. We were going on holiday and I couldn’t walk because my knee was so painful. That prompted me to see my own GP. What did you think might be causing your symptoms?

Reactive arthritis.

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Blood tests


My GP didn’t know.


• GP – they didn’t know what it was, but they understood what I was going through, gave me painkillers and agreed to refer me up to a rheumatologist. In this area, anyone with swollen joints is seen within a fortnight. Being a medical person I was looking for signs and symptoms, so I had photos to give the rheumatologist.

• Rheumatologist – she got it straight away and was in no doubt about what it was. It was on my list of things it could be. We only have one patient with palindromic rheumatism, but I had looked it up and thought it may be that. My rheumatologist thinks it is related to rheumatoid arthritis but my antibodies are negative so they don’t know what to do with it.

• Family – they were concerned and understood, as did my work colleagues.• Friends – yes they were all sympathetic and helpful. • Other health professionals – I found my occupational therapist (OT) was the best person. She reassured

me because she’d had other patients who experienced the fatigue I was getting. It was almost fitting into a fibromyalgia picture. You also get muscle wastage – the OT said you lose 30 per cent of your muscle mass when you stop exercising.


A matter of months.


Internet sites – it was a relief to know what it was, but there was very little information. I went online and checked various websites. I looked at blogs for information about people’s experiences.

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Information about the variety of symptoms, because what I have found online talks about inflamed joints, but I never had the time in between where it all settles down. It never really went away for me – I couldn’t exercise for up to a year and I was so tired. It all went away when I went on anti-rheumatic tablets.


The problem lies with GPs – it’s just not something you deal with very often. We have a list of 6,000 patients and only one has this diagnosis. I would encourage people to go to their GP straight away when they have the problem so the GP can see the evidence. It is an urgent thing and it’s okay to say they need to see a GP quickly. Education is important.


• Give up work – I couldn’t work at all for six months. • Change work patterns (e.g. go part-time) – we’re quite fortunate as we have locum insurance so I was phased

back over six months and I’m now back to full-time work. • Reduce or stop exercise – I have gone back to exercising, but not to the same degree. • Give up hobbies – no not really, but I’m not doing them as often.• Pace myself – I have changed what I do – I wouldn’t decorate my own house now, for example.


• Paracetamol.• Paracetamol/codeine.• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac, naproxen.• Disease-modifying drugs: hydroxychloroquine, sulfasalazine.

It’s hard to know what has worked. I didn’t take anything for three months. Then I took sulfasalazine and I was sick for a while, but then I went onto hydroxychloroquine too and I seem to be better. I’m still getting attacks, but not as frequently and not as severely.


They are there all the time but they move around a lot. When I was on sulfasalazine alone I got episodes every few weeks. Now I’m taking hydroxychloroquine too, I can keep going through it.

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I’m not entirely sure. Maybe stress or being over tired. And I’m menopausal – there’s possibly a link to the hot flushes but I don’t know. It doesn’t make any difference if I rest or keep going, so I just keep going. I have gone back to my exercise class and I think that’s helped. In the beginning I just couldn’t because if I tried it got worse.


• GP – good support.• Rheumatologist – good support.• Family and partner – yes, they’ve been really good.• Employer – they’ve been exceptional. • Friends – as normal.


Not really – when I saw the rheumatologist I had fatigue and she wanted me to go on various medications. I’m not sure if it was linked to the medication or palindromic rheumatism. I just had to go to bed in the afternoon because I couldn’t stay awake. But that has improved.


I’m hopeful it’s all going to go away. I don’t know. I’ve looked at it and read that some other patients get RA, but I’m quite positive and will wait and see.


It would be useful to know what other symptoms people are getting and to see research about the causes of these conditions. Treatments and long-term outcomes would be good to know about.


I’ve already mentioned about people on the frontline [GPs] who are seeing these things and not knowing about it. It’s really difficult to diagnose because the symptoms can fit with other conditions as well. It may even be a spectrum disorder. Future outcomes would be a good thing to know. It

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would be useful to know whether you should make the most of things while the sun shines. There is only very vague information about how effective medication is. I was offered methotrexate and I’m reluctant to go down that route because of the long-term side-effects – more evidence about whether it actually works would be useful.

55-year-old female NHS commissioning manager. UK based, experienced symptoms for five years before getting a diagnosis 12 years ago.


My GP.


The first ever symptom I had was in my left shoulder. I woke up one day and couldn’t lift it to brush my hair – it was too painful. I had had a rear-end shunt in my car and my GP assumed this was the result of bruising from that. A week later I had exactly the same pain in my right shoulder. Each time it happened, the GP didn’t do anything other than treating me for stress. It was just in my shoulders at that point, and jumping from one to the other. Then I started getting it in my hands – I knew it was the same pain. It feels like a stabbing going through with a needle, then a drawing pain, and throbbing.


I really didn’t have a clue – I thought I was going mad.


X-rays and blood tests for my rheumatoid factor.


At the time I worked at a hospital in a department. On one particular day my hands were swollen badly and a rheumatologist came in and saw them. He diagnosed it straight away and took photos of my hands. He said his patients wouldn’t normally have evidence like that to show him. He said I should be referred to him and I have been with him ever since. I had to go back to my GP and tell

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her what had happened and she did the referral for me. She didn’t know anything about palindromic rheumatism – she had never heard of it. The consultant said not everyone would have heard of it – he was old school and very experienced. He was the sort who listened and noticed. He confirmed it was palindromic rheumatism because the symptoms were there, but there was none of the damage of RA. However, he said I had a 60 per cent chance of developing RA, which I have since gone on to do.


• GP – not really. • Rheumatologist – immediately. • Family – when it went to my hands it was visible – it was swollen and hot, so everyone knew there was

something wrong. But not when it was in my shoulders – they could see I was struggling but there was no visual evidence.

• Partner or spouse – he was very understanding and helpful, but all he could say was to go to the doctors.• Work colleagues – yes, they could see I was flaring up and no one could understand why.• Friends – no I didn’t share at that stage.


Five years.

On getting your diagnosis, where did you get or find information about palindromic rheumatism? • Rheumatologist – being a colleague, he was really helpful.• Other people with palindromic rheumatism who I found online or through social media – I looked at

palindromic rheumatism forums and people were describing my symptoms to a tee. It was a relief to see that.

• Internet sites – I looked generally for information.


For the GPs to be more informed would be the first step – you start to feel depressed when you’re not believed. Education would be the first step and having literature in the surgeries. And if there’s any help for how to cope. Before you do anything you fear having an attack – for example I’m going on holiday and I’m hoping I don’t have an attack on the plane. Until you’ve got full-blown RA they can’t put you on proper medication because the palindromic rheumatism isn’t causing damage to

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your joints. You need something to relieve the symptoms. And it would be useful to know if diet makes a difference. It’s important to recognise it’s different for everyone.


I just gave up going to my GP after a while. Palindromic rheumatism needs to be more high profile for people to feel confident about seeking help. Everywhere you look there’s heart disease and diabetes and cancer – I know this isn’t life threatening but it’s bloody painful and affects your life. Greater awareness is needed. If you have depression and then you have this and no one can tell you what it is, that will add to it. Luckily I’ve never been that sort of person – but you begin to doubt you’ve got the pain. The tests come back normal and two days after being totally disabled you are completely normal. You just start to doubt yourself and find it hard to keep going.


• Reduce or stop exercise – I used to go to the gym and it was expensive, but I wasn’t able to use it enough to warrant paying. I can still do some things – I can walk around a field with my dogs.

• Move or adapt your house – yes, I had a range cooker but I had to change it because I couldn’t lift things out of it. I’m planning a new kitchen and will have easy taps fitted.

• Change diet – I’ve laid off tomatoes and that seems to have helped a bit. I was told to do the same with oranges but that didn’t help.

• Give up hobbies – the hobbies really were the gym and travelling, so I just gave up the gym. • Pace myself – it depends. If I’m flared up then yes. If not I can do absolutely anything, like a 20 year old. But

now I have RA I do have to pace myself more.


• Paracetamol. • Paracetamol/codeine. • Non-steroidal anti-inflammatory drugs: diclofenac – this did help but it can have a bad effect on my

stomach. I got it down to one a day and recently stopped completely. • Disease-modifying drugs: hydroxycholoroquine, methotrexate. The RA is well controlled with methotrexate

and hydroxychloroquine. They are helping with the palindromic rheumatism too.


Usually I could go for months without one, then when one started it would leave one joint and go to another – that could last a couple of months. It seemed to be assymetrical. It would go shoulder to shoulder, wrist to wrist.

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No – there is no connection with anything. I have learned that sunshine helps. When I had just palindromic rheumatism I had no flare-ups when we were on holiday, due to sunshine and relaxation.


Yes I do now, but it’s taken me all these years.


• GP – yes. • Rheumatologist – yes. • Family and partner – yes, very much so. • Employer – yes, the occupational health team has given me a pass to the visitors’ car park in case I can’t get

in. • Work colleagues – they are very supportive but I don’t give in to it – they do tell me off if they think I should

be working at home.• Friends – the biggest thing is that they don’t really understand the seriousness of the medication. You are

not supposed to drink so you get a bit of peer pressure because they don’t fully get it. But methotrexate can damage your liver. They say, well don’t take it this week because we’re going out. They just don’t get it.

• Other people with palindromic rheumatism – yes, via a website, but I don’t go into the forum very often.


I’ve got RA and I get iritis as a side-effect – dry gritty eyes. I also get ulcers on my cornea. I didn’t realise this could be a side-effect of the condition. They are not infected ulcers but they are inflammatory, so they are connected to the palindromic rheumatism.


I’m guessing it’ll end up with a stair lift – I’m anticipating hip and knee replacements as I get older. I’m planning ahead all the time.

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More on causes and treatments – at the moment all we’ve got is anti-inflammatories and pain relief. There needs to be more information for the medical profession and more about diet.


The biggest thing for me was the diagnosis. I really thought I was imagining it, but when you see it inflamed it proves something. It was pure chance that I got a diagnosis because I was working in a hospital. It would never have happened through my GP.

43-year-old female mechanical engineer. UK based, diagnosed six years ago in the US after two years of symptoms that went undiagnosed in the UK.


My GP.


About six weeks after my daughter was born I got what I thought was tendonitis in my wrist and went to my GP for that. He said sometimes your bones go a bit soft after giving birth, but it didn’t go away and then I got symptoms in my shoulder. I didn’t recognise it as same thing. I was doing a lot of sport and thought it was an injury. Then because of the pain in my shoulder I got referred to hospital. They did an ultrasound and couldn’t find anything. I had no blood tests at that stage. The pains went on for a long time. It would be bad for a few weeks and would go away and then come back. It was always in my shoulder at that time. In 2007 we moved to the US. I was having it in my hips and knee then, so I saw a doctor there. They did lots of blood tests and eventually referred me to a rheumatologist.

At that stage it could be really bad for one week, and then I’d go months without any pain anywhere. I was doing a lot of exercise and boot camps – I was very fit. I would go and see a rheumatologist when I had a flare-up but they couldn’t find anything. There were no inflammatory markers. They said I had a very slight positive rheumatoid factor in the US, yet in the UK they said I didn’t.


Tendonitis or a sports injury at first.

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When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? Ultrasound, blood tests.


Soft bones after giving birth.


• GP – no. • Rheumatologist – the US rheumatologists were quick and it didn’t take them long to diagnose palindromic

rheumatism. I hadn’t heard anything about it. They said just to manage it without medication for as long as I could. In the UK you only get about seven minutes with a rheumatologist, so you never get feedback – they don’t even have a chance to read your notes half the time. In the US they were more understanding and took as much time as you needed.

• Family and partner – yes, very understanding.• Work colleagues – I haven’t tended to tell them.• Friends – yes they were sympathetic. • Other healthcare professionals – the doctor at the chemical plant where I work has been really good. He’s

given me a lot of time and we go through drug treatments and their effects. Having that time has really helped and given me that sense of being an individual. We’ve gone through my options and alternative ideas together.


Two years.


Charities that support people with palindromic rheumatism – you read the Arthritis Research UK information and then mention it to your consultant and they say there’s no evidence – they just don’t acknowledge it. I didn’t look for that much – at least I knew what it was, and it wasn’t really bad, so I didn’t investigate at that point. I didn’t feel so worried about it. It’s got progressively worse recently so I have looked more and researched online. I got some booklets at hospital, but it’s hard to find anything very specific. There’s just one international website that seems very out of date.

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It would be good to know how it can start and how it can progress and also to know what to expect in terms of treatment. It seems like you get sent down this route where they try you on one drug and then another. It would be good to know that’s going to happen. Information about diet and support groups would be helpful and to know that the pain can be really bad and can affect your life quite a lot. It’s reassuring to know others are going through the same thing and that you’re not a bit crazy. The symptoms never seem to be very well described. People ask what it does, but it changes all the time and moves around. There should be more to raise people’s awareness. Also more about the amount and type of exercise you can do. They said I could do what I liked, but the next time I went I was inflamed and in pain and they told me to be careful. They just don’t know.


I’ve found doctors have been fairly unsympathetic. You see a consultant once a year for a few minutes and they ignore everything you say – they only want to prescribe you drugs and tell you to get on with it. They just give you one option and don’t want to hear your objections. They don’t admit that they don’t actually have enough knowledge or information.


• Change work patterns (e.g. go part-time) – no, for the moment, but I’m only part-time.• Reduce or stop exercise – I’ve reduced a lot. I still try to do some cycling but I do no running or high-impact

exercise. I just can’t do it because of the pain. • Move house – no but I could do with some adaptations.• Change diet – I did an elimination diet and it didn’t make any difference, but it did in the past when I gave up

potatoes or tomatoes.• Give up hobbies – I haven’t done any walking, cycling or camping for months.• Pace myself – yes – I go to bed a lot earlier and sometimes have to take a day off because I’m too tired.


• Paracetamol. • Non-steroidal anti-inflammatory drugs: ibuprofen. • Disease-modifying drugs: hydroxycholoroquine didn’t do anything on its own but I’ve now added

methotrexate. I started two weeks ago and I think it might be having an effect. This second week has been a lot better with the pain much better during the day and much reduced during the night. I’m still taking ibuprofen too, and folic acid.

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• Complementary or alternative therapies: I found acupuncture helpful for about a year. I stopped because it wasn’t stopping the symptoms but I decided to try the diet thing and it all gets a bit expensive. I’m also working more hours so I don’t have time. Acupuncture relieved the pain, improved my circulation and reduced the inflammation.


I have fatigue – my iron levels have been dropping and it makes me feel very tired. I find it difficult to sleep at night because the stiffness and pain are worse then. You get very cold – my feet used to get really freezing and acupuncture helped with that. The flares were random, but up until last October I’d have about a month or six months in between and the flares would last three days. Since October it’s been like I’ve had RA every day – I don’t know if that’s because it’s turned into that, but I don’t think so because it would be in particular joints. It’s still moving around.


There’s no pattern or trigger. I suppose stress could be a contributory factor. If I feel stiffness I take ibuprofen really quickly. Real hot heat makes a big difference – hot baths and showers really help, especially in the mornings. They help me get moving. I wear wrist supports when it’s bad and that seems to help.


A few weeks ago I’d have said I had no control but now I’m starting to feel better and to have four days without pain has been fantastic.


• GP – yes, up to a point.• Rheumatologist – yes, but up to a point.• Family – yes.• Partner or spouse – yes. • Employer – I haven’t mentioned it. This helps me deal with it by not thinking about it too much. • Work colleagues – they know.• Friends – they are good. • Other – I know someone who had juvenile arthritis and she’s been very helpful in saying what she’s been

through, which is a lot worse than my story.

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No.


I’m hoping if I get the right drugs I can get back to doing all the things I did before, especially the exercise and just feeling heaps better. The last few months I’ve spent a lot of time crying because of the pain and not wanting to carry on and not being able to do things with my kids. Not getting out and about. You get to the stage where you can’t even do the washing up, or get in and out of the bath. You feel very down when you get the flares. You ask why is it happening to me and why can’t I do the things I want to do any more? And you feel tired and grumpy. There don’t seem to be any groups that meet so you don’t have a support network. Other forms of arthritis do and they have regular meetings and get consultants coming along to talk to them. But most people have never heard of palindromic rheumatism.


I guess just to know what causes it and what the best treatments are. There are various views and there’s no family history of RA in my case, so where did it come from? What are the other treatments available in the rest of Europe? They use more alternative methods alongside the traditional. I’ve lived in France and treatments are completely different, so it would just be nice to know what’s going on there. And the other thing – are there any specialist consultants in this particular thing? You just get given a consultant and they may or may not specialise in palindromic rheumatism.


I’ve been thinking about moving but you don’t know where to go for the best. You have to be really assertive – or to have someone with you who can remember things and make sure everything gets said and asked. This time thing in the NHS is hopeless – I’d rather wait longer and have more time so the appointment has some value. In some places you only see a consultant once a year, others it’s twice. And these drugs are dangerous – it’s a bit risky. And the tie-up between hospital and doctors seems to be a bit loose – they don’t seem to know what is going on. You feel quite insecure and are forced to find out a lot of information yourself – and that can be dangerous.

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57-year-old female catering assistant. UK based, diagnosed five years ago after having symptoms for six years.


My GP.


I had extreme tiredness and joint pains that kept coming and going. My GP said it was a virus and would take 18 months to get out of my system. But it came back. I got dry, scaly patches on my skin. My daughter said to get them checked as they were getting bigger. A skin specialist said it was inflammatory lupus. She said that could cause joint pains but that I shouldn’t have swelling. My joint pains started to get worse and the joints began to look inflamed. It took a long time – about two years – for my GP to refer me to a rheumatologist, even after the lupus diagnosis.

The rheumatologist discharged me because he didn’t know what was wrong. I wasn’t feeling well so I went to my GP again and she did blood tests and my rheumatoid factor came back at 900 – she rang me at work and said she’d like to do more tests. She noticed my thyroid was swollen so sent me for a biopsy and referred me back to the rheumatologist. It was the same one. The biopsy came back suspicious so I was referred to another specialist and was told my thyroid was 25% likely to be cancerous. I discovered I had Hashimoto’s disease, which is another autoimmune disease – but that it was probably not cancerous. The rheumatologist was still not sure, but the skin specialist kept pushing me to ask him for a diagnosis. So I did – every time I saw him. He said the only thing he could think of was palindromic rheumatism. I’d never heard tell of it. He began to explain it and he was reluctant to put me on anything. He didn’t say why. I think it was because there was no damage to my joints. The rheumatologist said he’d call me every six months. By then the flares were severe and my joints were really painful and stiff in the mornings. My hands and wrists were badly affected. In one finger the inflammation never went down. I couldn’t bend my finger down into my palm. It was the same with the toes on one foot.


I thought I was going mad and that no one was listening to me.


Blood tests, biopsy.

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Ten years ago was told I had a virus because of my real tiredness and joint pains. Six years ago I was diagnosed with lupus.


• GP – their hands are tied depending on what the rheumatologist says, but you can’t get appointments when you need them, so you’re on your own in between times. There’s nowhere to go. I suffered for eight weeks just because I couldn’t see anyone, and then I went private in the end and managed to go back to work within a week and a half after that.

• Rheumatologist – he kept saying he didn’t know what was wrong. He actually discharged me. He said lupus didn’t cause swelling.


Six years.


Information about what I ought to be able to do – what would be good for me. The most worrying part for me is about medication – more information about that would be so helpful. I worry that prednisolone can cause an ulcer and I’ve heard such bad reports about methotrexate that I’m scared to go on it.


• Give up work – I’ve had to miss the odd day off work. As a catering assistant I just couldn’t lift things. I’ve been fortunate that many flares have been during weekends or holidays, but I’ve had to let my colleagues know. I had eight weeks of intense pain.

• Change work patterns (e.g. go part-time) – I have reduced my hours. Luckily it’s not a really heavy job. • Reduce or stop exercise – I’m not exercising. I try to walk, but if I do my feet swell. I think I should try some

gentle exercise. I tried just two dances at a family wedding, but my feet swelled up – luckily there was no pain thanks to the prednisolone.

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• Change diet – I haven’t, but I am looking into it. I think I might be taking too much sugar and might try a gluten-free diet. Some people say there’s a problem with tomatoes so I’m cutting them out now.

• Give up hobbies – I used to dance twice a week and I can’t do that any more. I did it for 15 years and was part of a club, but for the last two years I haven’t done it. I have given up gardening and any manual work.

• Pace myself – I have to and I find the prednisolone leaves you a bit breathless, and also shaky first thing in the morning.

• Other – I used to look after my disabled brother, but I can’t do that as much any more.


• The rheumatologist put me on hydroxychloroquine, but it didn’t agree with me because of joint pains. • A different rheumatologist gave me steroids as a trial for a month. I didn’t feel 100% on them so she said I

could come off them but would need to try methotrexate. I was worried because that is quite toxic. She said if I decided to try it I could call her and she would see me. My joints got really bad and I had to take a week off work because I couldn’t use my hands at all. I was off for eight weeks in all – I couldn’t even dress myself. My wrists, hands and knees were swollen. I had splints for my wrists at night. I didn’t sleep, I had to sit up at night. The pain would ease a little around 2pm. I asked if I could go to see the rheumatologist but I had to be referred again. Two weeks later I rang to ask when I’d get an appointment and they said they hadn’t received the letter, even though I knew my GP had sent it as urgent. I couldn’t get an appointment for five weeks, so I had to go private – I just couldn’t stand the pain any more. I got referred to a private rheumatologist. He said he couldn’t give me injections because too many joints were involved, and he put me on prednisolone. A skin specialist had noticed my joints were getting worse and had also suggested I take prednisolone. She asked if the rheumatologist had explained I’d have a massive flare when I came off the steroids. Now I’m back on it I’m able to move again. Within two weeks the inflammation has gone down and I can make a fist and get around. The side-effects are weight gain, a red and puffy face, and problems with my stomach. I find them quite tough. When I go back I don’t know whether to try and come off them, because if coming off caused my major flare last time, what will it be like this time? I’m not keen on the idea of methotrexate.

• Pacing myself – yes, and I’ve reduced my working hours.


It feels like having an abscess in your joints and no matter which way you lie it’s agony. Sometimes they only last a couple of days.

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They could just be out of the blue sometimes. I could go to bed and get up the next morning and not be able to use my wrist. Then you go into work and try and use it but you mightn’t be able to go in the next day. It’s very hard to explain to people how it can change in such a short space of time. If I overworked my joints I always knew I’d suffer for it. I used to be a big gardener, but I know I can’t do that now. I know I’d be in agony the next day. If I lift anything heavy, such as a heavy bin bag, I know it will affect me the next day.


No – I really don’t. I don’t think the doctors do either. I don’t even think they understand it.


• GP – they’re very good when I do ring them, but their hands are tied – they try their best to help. • Rheumatologist – the private one realises my quality of life is not good. • Family – my daughter comes and does the housework, and my husband helps. I never thought I’d ever

become that disabled. • Partner or spouse – he knows about me having to get up at night and sit upright to watch TV so I can get

into a bearable position. Nothing really eases it. I used to cry when I couldn’t brush my teeth or get dressed. • Employer – I referred myself to occupational health. I didn’t want a sick record or to seem like I was trying to

get time off. That helped my manager and they’ve been very understanding. They’ve made it possible for me to reduce my hours. I was very worried, but it’s good to know they’re on my side and I will try to extend my working life as long as I can. It’s very hard as my husband’s job has gone belly-up because of the recession.

• Work colleagues – they are very good. • Friends – I think they do. Especially my dancing friends. It took them a long time to understand why I’d

stopped going. • Other people with palindromic rheumatism – I’m on the Facebook group and it’s a great help because you

see what medication other people are on and how it’s affecting them. And to know their symptoms are similar to yours. It’s a great help. At the start I felt people wouldn’t believe me because by the time I got to see the rheumatologist it was all okay. They never seemed to tell me what it was.

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Lupus and Hashimoto’s.


The specialist thinks I’ve moved on from PR and lupus – my rheumatoid factor is still high, but that’s not specific for RA. I find it quite worrying. You can feel it’s depressing because you want to be active, but you can’t be. You don’t want to be on tablets but you have to be, you’re afraid of what they’re doing otherwise. Is it going to shorten your life? All those things come into your head.

27-year-old female learning and development manager. UK based, diagnosed two years ago after having symptoms for six months.


• My GP – I hadn’t a clue what was going on and didn’t approach the doctor until a few months after my first symptoms. I happened to go for something else and said, ‘Oh, while I’m here, what do you think of this?’ He said he thought it might be RA and referred me to hospital straight away.

• The internet – I looked up RA after what my GP had said – I became very scared, especially by the photos.


I woke up one morning. I’m not a very sporty person and the joint in the middle finger of my left hand, where it joins the hand, was really stiff and looked all crooked. I couldn’t straighten my finger and to bend it really hurt. It looked really damaged, but I knew I hadn’t done anything. It lasted for a day or two and then just disappeared. I didn’t think much of it and a month later the same thing happened in the same joint. A few weeks later it happened again and began to spread to more of the joints – then it moved to my right hand as well. There was stiffness, swelling and pain, and occasional redness. I couldn’t even unscrew a bottle top or fasten my bra because I couldn’t put any pressure on it. Things you normally take for granted became impossible. It’s really hard to say if I had any other symptoms. I often work long hours and often feel tired, so I’m never sure if that’s connected.


At first I thought am I going a bit mad, am I really stressed at work and is that triggering it? I was

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starting to question whether there was really a physical problem, but I didn’t feel particularly stressed at work, so that didn’t make sense. In the end, I had no clue what it could be. I went to the doctor’s and mentioned it and he just sat back in his chair and looked at me and said there’s only one thing I can think it might be, and I really hope it’s not this, but it could be RA. Then he told me not to worry and referred me to a specialist. I immediately got on my phone to look up RA.

When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? I got referred to hospital. I waited two months for an appointment and saw a rheumatologist. When I went along for my first session, typically I had no symptoms. I just had to tell him what I’d experienced and he did some blood tests. Again I heard the term RA being used. I had to ring for the results, which took three weeks and they came back negative. I didn’t really know whether that meant I had RA or not. I said I wanted to go back to the consultant because I didn’t want that to be the end of it when I knew there was something going on. I managed to get an appointment, and he said I don’t think you do have RA, but we’re not sure what it is. I realised then that I’m quite a black and white person – I need to know what something is, so I can deal with it. I really struggled not knowing what it was. At this point my flares had become much worse and were debilitating, affecting all my fingers and wrists. I was feeling very tired and nauseous – like when you have flu or a bad cold and feel really groggy and not with it. I was having to go to work and do an active job where I was interacting with a lot of people and I was really struggling. I’d started to take pictures of my joints during flares, so I could prove to people that there was a problem. The rheumatologist diagnosed palindromic rheumatism, based on my symptoms alone, rather than on any test results.


• My GP said it was RA. • The consultant said he thought I’d got palindromic rheumatism, based on my symptoms and negative RA test

results.


• GP – I was really happy that he referred me straight away, but he could have worded things better. • Rheumatologist – yes – he’s very matter of fact, but very eminent in his field, so I was really happy to have

him. It’s just the luck of the draw. He’s good on diagnosis, but not empathetic.

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• Family – no. I told them about it over the phone, but they didn’t know what to say and thought surely it would be something else. They kept saying they were sure I’d be fine. I didn’t really feel I could be completely honest about how it was affecting me. I felt so frustrated until I spoke to my grandma. She had RA in her younger days and her first response was real sympathy – I needed someone to be honest and frank about it and take it seriously. She said it was horrible, and I needed that. She’s had multiple joint replacements but she’s a jolly old lady and still driving in her mid 80s – it’s never stopped her from doing things. So seeing her as someone who has been through similar things, but has an active life, really helped. She’s been a good figure to have as an inspiration, even once I knew I had palindromic rheumatism, not RA

• Partner – we’ve been together for four years and this happened two years into our relationship. He’s been absolutely fantastic. He’s been the only person who bothers about how I’m feeling – literally no one else does. He’s a psychologist, so he listens to people every day. We were living together at the time so he’d be aware of bad flares. He saw me get upset and would be there to give me a hug and talk through it and ask if there was anything he could do. Even if it was just running a bath, that was something that made a huge difference. I was always wary of making life miserable for him, which meant I tried to keep things to myself a lot. But he could see that, so we came to an agreement that if I was struggling he could just come and give me a hug. I don’t know what I would have done without him. It was always playing on my mind – I didn’t want him to go through it too, so that was always a worry.

• Work colleagues – I remember telling my manager and he was very dismissive, saying I was 24 and couldn’t have arthritis. People don’t realise even children can have it. He kept saying I’d be fine and there’d be a cure. I don’t think he believed I was going to the hospital. He booked me to see the company doctor to get a diagnosis, before I went to the rheumatologist, and said it as if this was meant to be a benefit for me. In fact I felt it was something I was forced to go through. The company doctor saw me one lunchtime and confirmed it was RA – this was before I was properly diagnosed. I went back to work afterwards. When my boss heard this from the company doctor he realised he might need to offer some support. He allowed me to have access to my emails at home so I could work from home during a flare, which was not exactly an appropriate response, given that my flares affected my hands so badly. He also shared it with our head of department, without informing me, and she took me aside and said she’d always be there for me if I needed to talk. It felt really fake because I didn’t actually have a good relationship with her – I would never go and talk to her. That’s all I got from work. Other than when I mentioned it, it was never asked about. I always had a hot water bottle with me at work, as heat can help with the pain. I’d have that on the desk with my hand on top, but no one would ever say anything about it. I’ve learned from this that if I ever see anyone else experiencing pain I will always ask if they are okay. I only had two days when I worked from home, because my ankles were in pain and I couldn’t get out of bed. When I got back to work it wasn’t how are you, but this job is late now. I couldn’t prove what I’d done while I wasn’t there, and I didn’t feel trusted, so I couldn’t get through

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to anyone. I have recently changed jobs, coincidentally. • Friends – they didn’t really know how to deal with it. When I told a friend it might be RA her response

was ‘I guess it’s a bit like IBS – kind of in your head and you just have to get it out of your mind’ – I felt so frustrated because people weren’t taking it seriously or believing me. I told people individually, and coming away from each conversation I felt so frustrated. People were being very positive, saying it’ll be okay and there’ll be a cure. They just didn’t want to know what I was going through.

• Other – I was really down and in floods of tears when I was on my own. I didn’t know what to think about it and how to plan for the years ahead – what was going to happen and how would I cope? But there was nothing there to give me a reason not to worry. People saying you’ll be fine just made me angry.


About six months.

On getting your diagnosis, where did you get or find information about palindromic rheumatism? • GP – no.• Rheumatologist – I tried to ask him for information on how to manage it, but I didn’t get anywhere. His

view was this is what you’ve got, there’s not much known about it and the only way to deal with it is to take medication – for him it’s as simple as that. He issued me with medication that day.

• Other healthcare professionals – no.• Other people with palindromic rheumatism who I found online or through social media – it didn’t occur to

me to look on Facebook at first, but I did recently and there was an open group. Anyone you know could see what you’d posted on it, but I didn’t want to share everything with everyone I know, so this wasn’t for me. However, now they’ve made it private, so you can have private conversations. For the first time I’m in touch with others who have PR and who get it, and they want to know what I’m experiencing. It’s such a relief to find others like me, and it’s a very active group, despite being fewer than 200 people – it’s an absolute godsend. Nothing else has been remotely helpful.

• Internet sites – this was the main thing after I was diagnosed, but there’s not much available. I looked at the International Palindromic Rheumatism Society (IPRS) and got a little from that and signed up to the forum, but never got a response to my post. I felt completely alone. I can laugh now, but I felt so alone with the hospital saying there was no support and getting nothing from the IPRS when I did reach out. I asked at the hospital if there were any support groups and the rheumatologist just said no.

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There was lots of information about RA. I noticed there were support groups, and looked around to see what there was in London, but they were all in the outskirts and always held during working hours, so I couldn’t attend them. So I felt very isolated.


People need to know what the different treatment options are – the different medications out there. I felt I didn’t have a choice. The medication I was given is a very harsh one and I had no idea what to expect. It would have helped to know what the side-effects were likely to be. I think it would be good to know if there are alternative treatments that could help, such as lifestyle changes, but I’m having to work everything out for myself. Information about diets would be helpful, as well as other people’s stories, tips and ideas. It would be useful for people to know they’re not alone and that there are other people who know what they’re going through. Information about pregnancy is important too – I want a family one day but don’t know the implications.


• Change plans for having a family – I haven’t planned on having one yet but hope to one day and then I’d need information about pregnancy.

• Reduce or stop exercise – at times, though I’m not a huge exerciser. I’m currently training for the Moonwalk Marathon and I’ve set myself the challenge, to prove to myself I’m still capable of things like that. During my training I’ve planned to go for long walks but not been able to yet because of my joints.

• Change diet – I stopped eating tomatoes, dairy, processed food, etc., but noticed no difference in my flares – their strength and regularity stayed the same. I stopped after three months because I was feeling miserable – I’m glad I tried but I don’t feel it worked.

• Give up hobbies – I’m worried about photography, which I love. I have a big camera, which I need to be able to grip with both hands, so sometimes I’ve not been able to use it when I wanted to. But it’s not stopped me completely.

• Pace myself – day to day I carry on as normal, but I adapt on days when I’m not feeling too good. If I’ve got a flare I feel a lot more tired than I normally would. Often I might have to change my plans if I’m feeling too tired, or suspect they will tire me too much.


• Paracetamol – no help at all. • Paracetamol/codeine – no help.• Non-steroidal anti-inflammatory drugs – again no effect.

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• Disease-modifying drugs: hydroxycholoroquine – I’m on a strong dosage and the side-effects at first were horrendous. The rheumatologist hadn’t mentioned anything about them, but I know from the Facebook group that they are quite common. I was really worried when they were happening, and didn’t know whether I should stop taking the tablets. I was having the worst headaches ever, feeling nauseous, being sick, having diarrhoea, dizzy spells with the room spinning and vivid dreams. I felt really out of it. It took about three months for those to settle down. I went to my GP to ask if I should continue them. He said he wasn’t surprised or worried about what I was going through, and to stick with it but to go back after a few months if the effects didn’t settle down. I found out if you don’t take it with food it can really upset your stomach, which was something I hadn’t been told. It really helps a huge amount to know what to expect, so it’s worth doctors going through the side-effects. Other than that, the medication hasn’t necessarily changed the number of flare-ups, but has reduced the severity. Before taking it, if my joints were inflamed I couldn’t move my hands at all. But now I tend to have a lot more dexterity and can manoeuvre my hands more, even if they’re painful. I don’t feel so disabled.

• Complementary or alternative therapies (e.g. yoga, meditation, herbal remedies) – I’ve tried a long course of acupuncture, but it hasn’t been successful.

• Pacing myself. • Talking therapies – I haven’t found anything but the Facebook group.


They tend to last about two days, sometimes longer. I record all my pain in a diary and I can’t see any pattern at all – they are really random. A flare can come on in ten minutes and even go in ten minutes. On average I have ten days a month of pain.


I’ve tried to look for themes and patterns but I can’t find anything.


No, not at all – it controls me.


• GP – I haven’t been for a while, but feel I’d get support there if I needed it; however they don’t

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understand what I’m going through.• Rheumatologist – no support, but perhaps he understands.• Family – to an extent – they still think I’ve got RA and can’t understand what I do have. They’d be there if I

wanted to talk to them but they wouldn’t know what to say. Dad will sometimes ask how my joints are, but only because he’s started getting a bit of arthritis himself.

• Partner – definitely – he’s always there when I need him.• Employer – my new employer doesn’t know. I’m two months into my job and when I was preparing for my

interview I got advice about whether I should mention it. It’s not technically a disability, so I decided not to. On the HR form I had to complete when offered the job I did say I had palindromic rheumatism, and put a brief description with a link to a website. Nothing has been said to me about it. I’m alone in my team so I’m not being monitored. I don’t feel I’ve had the opportunity to mention it to anyone yet, apart from the two girls I work next to. My flare-ups haven’t been too bad since I started there. But if they do get bad I’ll talk to the lady I report to.

• Friends – I don’t get any support from them. They know about it but still think it’s RA – they won’t mention it unless I do. When I do, they will be a bit sympathetic, but quickly change the subject. I’ve tried to explain it to them, saying that I feel really down and am not getting any support apart from my partner, but even after that they offer no support. I feel I’ve found out who my true friends are, and it’s very few.

• Other people with palindromic rheumatism – I get most support and understanding from my partner and the Facebook group.

• Other – people rarely ask how I’m coping and getting on – if they can see I can’t pick things up properly they won’t ask about it. It’s just ignored, even though they can see it.


I haven’t noticed anything. I always get asked at the hospital if I’ve developed a rash and I never have.


I was on the bone marrow donor list. But now I have an autoimmune disease you can no longer give blood or bone marrow – I hadn’t a clue about that. I’m not sure how it would affect organ donations, so I’ll have to find out, but I don’t know where to find that information.

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58-year-old male deputy head teacher. UK based, diagnosed last year after experiencing symptoms for 11 years.


• NHS Direct.• My GP – it wasn’t my usual doctor and he was obviously quite concerned.


The date it started was my mum and dad’s golden wedding and we’d met up as a family in a pub. While we were stood talking in this pub it felt like I was standing on an uneven floor, but it was a perfectly smooth carpet. Driving home that night my wrists started to ache and the next day I went to work. During the afternoon my feet started really aching as if I’d done a long walk in my walking boots. But I knew if I took my shoes off it wouldn’t go away. I went to a staff meeting and when I got up from that I could hardly walk to my office. I could drive home, but when got home and took my work clothes off I saw my lower legs and feet were covered in a purply brown rash. I rang NHS direct and they asked me to check it with a milk bottle. They said I should go and see my doctor. It was more like an aching pain at this point. The pain in my wrists wasn’t there the next day. I went to see the GP and he was obviously quite concerned. He took some blood samples and told me to ring the next day. I did, and the receptionist said the results wouldn’t be in yet. I said the doctor had asked to know if my symptoms had changed, so I said some of the spots had joined together to make bigger patches. She rang back and said they did have the results, and that I needed to go in and see the doctor. He said he’d taken the samples to the hospital himself and picked up the results – he said the blood counts were normal so it was not leukaemia, as he’d feared. But he didn’t know what it was.

Over the next few months I had different episodes in different joints. And I can remember driving home and finding it really hard if it affected my wrists and hands – some gear changes were really hard, really painful if I had to push the gear stick. I had to use my other hand to change gear. And then it would go away and crop up somewhere else. Several weeks later and for a long time I felt like I was walking on a pebbled beach all the time – that became the main problem and that eventually got me referred to a consultant. It was really painful to feel all the time like I was walking barefoot on pebbles.

Meanwhile, over the months strange things happened. One night my ankle felt wrong and I put my hand down and the ankle bone was the size of a tennis ball, but then it would go back to normal after four or five hours. On another occasion my leg was itching. I checked it and it was really swollen and the skin was really tight and bright coloured. It looked like it had been bitten by a snake, or like a sausage about to burst.

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I went back to the GP when one morning I woke up and could see my own cheeks. I thought there’s something wrong here. I looked like I’d done five rounds with Frank Bruno. My eyes and cheeks were swollen, with lumps under my cheeks and forehead. My wife and son were horrified. I didn’t go into work that day but went to the GP and you could see people in the waiting room thinking I’d been in a fight. The GP was clearly surprised. He hadn’t expected to see me back – I think they were thinking post-viral reaction. He asked for a sample and when I came back he and my normal GP were looking through some medical books. They said one of the things we look for when there is swelling on the face and hands is kidney failure. But my urine sample was normal.

They referred me to a consultant. He thought it was plantar fasciitis and prescribed insoles, but they didn’t work. I had more tests but my uric acid levels were at the upper limit of what they should be, so they decided it could be gout and treated it as that for a while. It was in my feet, ankles, fingers and wrists and occasionally in my elbows, but not in my knees, shoulders or hips (except once). My joints would look very inflamed and red. The treatment did help – I was given allopurinol. A family member gets gout and someone had recommended cherry juice to him, and he said it was helping. I gave it a try at £25 a month and weaned myself off the medication, as I would rather take something natural than drugs. It seemed to work for quite a while. But occasionally I’d get bouts of the achey joints – it didn’t go away completely. The gout diagnosis came about a year after I got the first symptoms. For a few years after that with these treatments it was generally okay, except that it could be triggered by activity. It would flare up and would then go after a few weeks, and I could live with that.

But two years ago I was doing some decorating in the summer holidays and got a flare-up that didn’t go away. By Christmas I was still getting pains, so I went back to my GP and he referred me to a consultant again.


At first I thought it was leukaemia because of the rash and bruised feet.

When you went to your GP or other health professional about your symptoms did you have any tests or investigations, such as blood tests or x-rays? Blood tests, urine tests.


It’s not an easy condition to diagnose, and for quite a few years it wasn’t being treated as rheumatism or arthritis. The first GP thought leukaemia, then possibly a post-viral reaction, then gout. The first consultant thought it was plantar fasciitis. I was even tested for tropical diseases.

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• GP – I think they were as baffled as I was but they did believe I was suffering. They were concerned – when you turn up looking like you’ve been in a fight it’s hard to ignore. He told my wife I was his star patient at the time.

• Rheumatologist – the second time I was referred I saw the same consultant as the first time, but this time he diagnosed palindromic rheumatism – I’d never heard of it. When I first went the only symptom he was really treating was the problem on the soles of my feet. By then the inflammatory events had calmed down.

• Family and partner – they were sympathetic; no one thought I was swinging the lead.• Work colleagues – I didn’t really have much time off work but sometimes getting from my office to the car

in the evening was quite a struggle. And when I was having trouble with my fingers and wrists you could see it. Work colleagues did understand I was struggling. It was 2001 so people were making jokes about foot and mouth disease. I had been an active runner and kayaker and people knew it was impacting on that side of my life.


Ten or 11 years.

On getting your diagnosis, where did you get or find information about palindromic rheumatism? • Rheumatologist – he gave me lots of little booklets – but they were about rheumatism and RA. He told me

to look palindromic rheumatism up online. On my second visit he started talking about how to control it and gave me leaflets on the different drugs.

• Internet sites – I looked it up recently which is why I ended up doing this survey. There was nothing from Arthritis Research UK when I looked last year, but this year I was doing a spell check for palindromic rheumatism and Arthritis Research UK came up


Those little leaflets from the rheumatology department were quite useful, but something specifically about palindromic would be good.

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The only reason I went back to my doctors was because I’d got used to it happening and assumed it was gout, but then it got worse. So unless you’re aware of an issue or a problem, you just live with it.


• Reduce or stop exercise – I have given up running, but for other reasons as well as this. However I’m still fairly active. I think I’ve damaged my knees, not necessarily because of this. I go swimming and take up gym membership from time to time. I do quite a bit of walking and go cycling.

• Change diet – but that’s not necessarily driven by this. I don’t drink as much coffee, from when I thought it was gout. I eat a lot more fish, but it’s a general health thing.

• Give up hobbies – I still have a kayak and do still do it occasionally. I don’t compete any more, but that’s probably age related. There were times ten years ago when I couldn’t compete because of my palindromic rheumatism though.

• Pace myself – I probably do pace myself better than I used to, but again not necessarily as a result of palindromic rheumatism.


• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac. • Disease-modifying drugs: sulfasalazine – I’ve had no problems with it since I started it last year, and the

rheumatologist has said in six months we’ll try to reduce it. I tried steroids at first to give my immune system a boost and that helped. Sulfasalazine has stopped the major issues.


At the beginning they would just happen and move from one joint to another for three or four days, then stop. Then it got into the RSI-type thing [flare-ups after repetitive activity] and that would stop after a few weeks, then in 2011 it went on for months.


If I was doing something repetitive, like painting, I would get a feeling in my wrist and then it would go to another joint. It would be like that for three or four weeks, then stop. Sometimes I use a hot water bottle or get into a comfortable position. I could get quite uncomfortable in bed and used to use ibuprofen gel occasionally. Sometimes it helped and sometimes it didn’t, but because it was moving about you couldn’t really say.

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Yes.


• GP – I tend to go there for blood tests because I’m on sulfasalazine. And I will see him about getting calcium and vitamin supplements.

• Rheumatologist – he is very supportive. It’s a good little unit at our hospital, which has a helpline. • Family and partner – yes. • Work colleagues – yes. • Friends – you tell them about it and they know I’ve had issues and I’ve told them what it is. One friend is an

ex-nurse so she knew about sulfasalazine. • Other healthcare professionals – I’ve seen an occupational therapist and she said there was support available

if I need it in the home.


I’m not aware of anything.


I’m not depressed about it, and that’s down to the fact that I know it can be controlled with drugs. Obviously there’s always the worry about being on drugs for a long time so I’m pleased about the prospect of reviewing my dosage. At the moment it’s not having a massive impact on my life.


I don’t know. A bit more awareness in the medical professions would be good.


When I went to see the consultant for the second time it was helpful just having a name for a condition. It’s good knowing that all these odd things that are happening to your body are connected. At first I was saying to people it was gout, but when it was coming from repetitive action I knew it wasn’t that. So it’s actually helpful to have a diagnosis with an actual name. At first they said it was a post-viral reaction, which could be anything, or inflammatory events in your body. The next step is for everyone to actually know about palindromic rheumatism and understand what it is.

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43-year-old female writer. UK based, diagnosed nine years ago after experiencing nearly two years of symptoms.


• My GP – I had to have a couple of appointments despite insisting on seeing a rheumatologist (so much so that when I did see the rheumatologist he told me off). They wanted to see if the symptoms went away.

• A&E – I can’t remember if I had an x-ray and can’t remember them diagnosing anything.


I thought I had a broken finger. I’d been doing boxing with a personal trainer and the next day my finger was so swollen I couldn’t move it. I thought maybe I’d done something when I was boxing, though it didn’t hurt at the time or immediately afterwards. I went to my GP after about a month of having classic symptoms. I had stiff fingers on waking – I couldn’t move them and they were often swollen or painful. It was mostly continuous in those joints initially. It didn’t move around until later. I was calling it arthritis already. I had really bad flares at this stage. I was crying my eyes out and wanted morphine.


I thought it was arthritis. It was very worrying.


Blood tests – they all came back normal. I had no inflammatory markers and no rheumatoid factor, and that’s still the case.


She was not going to tell me what she thought was going on until I’d seen a consultant. She did refer me relatively quickly – within three months. But then she didn’t give me the diagnosis once she had it. I found it myself 18 months later in my notes.

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• GP – she was very good when I got to see her. She did take me seriously. They do apply a bit of a wait-and-see policy. But she was not very forthcoming on pain management.

• Rheumatologist – he told me off and was extremely rude. He was an old-style, upper class expert who said lots of people wait months and months before they get a referral and what was I fussing about? He told me not to eat cream cakes and get fat. I saw different consultants over six months and was never given a diagnosis or any disease-modifying drugs (DMARDs). I was tried on non-steroidal anti-inflammatory drugs (NSAIDs), none of which worked. I paid for an appointment with a private consultant because it was so confusing. I couldn’t be referred to a pain management clinic. The private consultant said I already had a diagnosis and immediately put me on drugs. He is also an NHS consultant so I got transferred to him. He started me on DMARDs, which I should have started earlier. He does listen, and leaves my treatment choices up to me. Another one shouted at me because I was reading a scientific paper he thought I shouldn’t be reading and he said I’d taken up enough of his time already. They don’t read my notes.

• Family – they are very understanding and supportive. It’s very difficult for people to grasp it though. It’s not always very visible – when it is it’s better in a way so they can see.

• Partner or spouse – I tell him I’m having flares in my joints so he knows what’s behind it if I’m snappy – it’s just practical.

• Work colleagues – I was working for a small cooperative and they were understanding.• Friends – I did have one who is no longer a friend – she would insist I shouldn’t be calling it arthritis until I

knew what it was.


20 months.


• GP – no. • Rheumatologist – I don’t think so.• Other healthcare professionals – no – for example in A&E people have never heard of it. • Internet sites – I did some searches online and found various bits including a leaflet from Arthritis Care. It

didn’t represent my experience, which was very confusing. It said it happened in single joints only, and I was getting them in more than one. It has since been updated. There wasn’t much available, but there is more now.

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The medical profession needs to know this is an extremely distressing experience that shakes your foundations emotionally as well as physically because it’s so strange. We think we’re going mad. We think how can it be that I can’t walk at 9am but by 6pm I’m dancing? Or one day I can’t use my hand, but the next day it’s moved to my opposite elbow? It’s emotionally distressing and disruptive. When you don’t know where it’s going to turn up next and don’t know what you could or should plan it adds a different layer of stress. I regularly have to cancel things at the last minute – they need to understand there is a very big psychological impact. It would have been useful to know what I could do or should do. I didn’t know whether it was right to use my joints and exercise. The psychological impact of going into remission and not knowing how long it will last needs to be understood. Every time you get a bad flare after a remission it’s another loss, when you realise it’s still here. I don’t think they really understand that, or the quality of life issue. The doctors want to prevent joint damage and we are a bit lucky that with palindromic rheumatism joint damage isn’t so fast. But that lack of understanding about quality of life doesn’t help. The fatigue element doesn’t come up in any literature. My rheumatologist says it’s not part of it, but other people with palindromic rheumatism confirm it is.

Information about spoon theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ would have been helpful to explain the way energy reserves work. It’s a very useful way of explaining it to other people.


I believe the DMARDs have worked to a point for me and that without them things would have been a lot worse, so it’s worth getting help because something may work for you. It’s really important to get an early diagnosis and treatment plan, so it becomes less likely to develop into anything worse. Don’t be fobbed off – you need to try and get control as early as possible.


• Change work patterns (e.g. go part-time) – I became freelance. I don’t believe I could hold down a full-time job because I can’t predict when I’ll be okay. I couldn’t get up and go to an office by 9am, and working five days a week floors me. As a freelance I can manage my time and workload. I try to leave Friday as a non-work day.

• Change job – I’m still doing the same sort of work and if I do something else that uses up more energy I have to go to bed afterwards. I have voice-activated software for when I can’t type.

• Change plans for having a family – no, I never planned one. But once I got this there was no question of it.

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• Reduce or stop exercise – I had to change the kind I do. I don’t go to the gym and do weights anymore but I do exercise daily – I always do something. I have to adapt, depending on my flares and pains. I go to Zumba classes twice a week, do Pilates, yoga and cycling. When my mobility is limited cycling can be easier than walking for me. I did a lot of cycling before getting palindromic rheumatism and it’s really important to me. I don’t have a car anymore.

• Change diet – I tried to cut down on sugar to see if it affects my energy and fatigue levels. I’m not convinced – it may have made a difference, but only a small amount. When I lived in Madagascar my diet was very limited and fish-heavy. My flares were fewer there, but there could be so many different reasons for that. I’ve never really found any dietary links.

• Give up hobbies – I can’t do some things that I’d like to do, like paint or hand sew – gripping is a problem. I go to do things and realise they’ll trigger a flare.

• Pace myself – I’m trying to do this. The trick is to try and pace myself before I run out of energy. I’m very good at recognising when that has happened, but I can’t tell what’s going to make it happen in advance.


• Paracetamol.• Paracetamol/codeine – this gets me to sleep but doesn’t touch the pain.• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac, naproxen – they don’t make any difference.• Gabapentin (nerve pain killer) – this sent me psychotic and the higher the doses got, the worse the flares got.• Tramadol – this did nothing on its own, but during an extreme flare I took a combination of painkillers that

just took the pain down from 10 to 9.5. • Hydroxychloroquine – this initially made a huge difference and the flares lessened in frequency and intensity,

though it didn’t stop them. I’ve been on it off and on for six or seven years. I stopped briefly when I was overseas because I wasn’t getting many flares. It didn’t seem to be getting any worse. At that point I felt it was helping but not clearing it up. Then I got a bad flare in my finger two or three years ago and I went back on a small dose of this.

• Sulfasalazine – this made me so fatigued I couldn’t leave my bed. • Doxycycline – I used this in Madagascar as an anti-malarial drug and had fewer flares. Some people do

believe antibiotics are helpful for PR and I thought I’d try it with my rheumatologist’s agreement, but it didn’t really work.

• Yoga – I’m a little bit limited but I do it. Most classes are not helpful because Ashtanga is too strong, and with Iyengar I get stiff if I stay in one position for too long. Classes for people who are ill are too basic. I’m going on a yoga holiday soon. Yoga is good for the body and mind but doesn’t help a flare.

• Meditation.

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• A mindfulness-based programme for people with chronic illness – I self-referred and paid for this. The only thing it doesn’t do is make the pain go away, but it helps you cope.

• Pacing myself.• Pain management groups/clinics – I didn’t get a referral for this till last year. It’s not very well advertised but I

would have benefited earlier from this.• Vitamin D supplementation – I’m going to continue that because I’ve consistently had low levels. I’ve been

low, but then also just borderline and there seems to be a link. It doesn’t help anything, but I’m keeping my levels up.

• Co-Enzyme Q10 supplementation (for fatigue) – I’m taking this now and thought it could be helping, but I did then have a week of being very tired. It’s hard to tell because you’re up and down all the time.

• Capsaicin.• Willow – no help. • Devil’s claw – no help.• Keeping a food diary.• Acupuncture – I tried this twice and had an extremely severe reaction. I asked if it was supposed to get

worse before it got better, and the therapist said no. I had an extremely severe flare straight away and felt they must be connected.

• Homeopathy – no help.• Reflexology – very relaxing, but it doesn’t help. • My rheumatologist’s priority is not quality of life but limiting the joint damage, so he doesn’t yet recommend

methotrexate.


The fatigue can be as bad as ME. There are days when downstairs seems a long way away. But it’s sporadic and completely random. It’s so hard. Over the last month I’ve always had pain somewhere, but the month before that I had hardly any. A month pain free is the longest I can expect now. I can get pain during the night but be pain free during the day. Today it’s in my right elbow, left wrist, two fingers of my right hand and my left shoulder. Yesterday there was nothing. I never know how long the flares will last – it could be a week or hours. The pain levels vary from 1 or 2 to 10 – the latter are every three or four months. Once a month or so I get flares at pain level 7 or 8. I’ve got some kind of pain around a third of the time, maybe a bit more. Before a flare I feel I’m coming down with flu – I get a sore throat and feel achey.

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I know if I haven’t had much sleep I might get a flare. Long-haul flights definitely bring them on. I go to music festivals and I know by the third day I’ll have a bad flare. Yet I have sometimes been to festivals and not had one. Overdoing it will probably lead to a flare, but not always. I can get very stiff but that doesn’t necessarily cause a flare, though it might cause a similar pain. Typing doesn’t cause it, but gripping does. Happily, the exercise I do doesn’t seem to bring on flares. I have no idea why I have today’s pain and you’re always thinking what did I do?

If I sleep too much I am as fatigued as if I hadn’t slept. If I get more than eight hours I can’t function, so I have to make sure I don’t oversleep.


No – I only have control over how I deal with it, which is not the same thing. The mindfulness makes it okay to not be in control.


• GP – my regular one has retired so I’m not sure but I think the new GP is okay – she’s generally supportive if I can get an appointment. I’m not sure if she understands what I’m going through.

• Rheumatologist – if I can get an appointment it’s good – if I get fobbed off with one of the registrars it’s not good. Since I put in an official complaint it seems okay. I’m not sure he really gets the quality of life point. I don’t think any professionals really do.

• Family and partner – yes. But my family is confused by it, my mum especially. She was a health professional and just keeps saying there’s got to be a reason for it. They always think there has to be an answer. Or that you’re doing something wrong. She wants to understand the condition, but she can’t accept it’s happening to me. Of everyone, my partner is the one who really gets it.

• Employer – I mostly work with small organisations and I’m open and honest about it and it’s not been a problem.

• Work colleagues – they are extremely supportive and understanding.• Friends – they are accepting of the fact that I have to cancel appointments. They don’t understand

the fatigue, but they do care about what I’m going through. A friend’s partner has fibromyalgia so she understands, and another friend who has osteoarthritis does too.

• Other people with palindromic rheumatism – the Facebook group is lovely, if a little repetitive. When I used the IPRS website that was supportive, but I don’t find it very user-friendly. It helped answer some questions when I was having a very bad time though. The only real understanding I’ve had is from people who have the

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For example, finding out that other people get flu-like symptoms. I write a blog about palindromic rheumatism and I’ve found it so rewarding. People have thanked me because they’ve come across it and it’s been really nice to have them reach out to me.

• Other healthcare professionals – I saw the doctor at the pain clinic a couple of times. He prescribed me a morphine-strength opiate that I haven’t taken yet. He said if that didn’t work, nothing would.


I don’t think so. I did have tendonitis in January and had to rest my wrists for a few months. I recognised it was different from a flare. They’re not sure why I suddenly got that. My palindromic rheumatism developed in a year when I ended a 12-year relationship and I believe it’s not uncommon for autoimmune diseases to kick in during times of change.


I don’t really know. I think if I don’t know what’s going to happen tomorrow I can’t think too much about what the future might be. That’s not a negative thing. I don’t worry about deterioration as much as I did.


I really hope this research makes a difference to our quality of life. I’d like quicker diagnosis for people, research to find specific treatments for palindromic rheumatism, and ultimately a cure. At the moment the only thing my rheumatologist has to work on is what we would do if I had RA. I am the one finding links to give to him to suggest treatment.


I had tendonitis as a child for a long time. I also had knee problems that I was told were growing pains. Now you look back and wonder if they’re connected. Once I was convinced spinach had caused a flare, but since that one occasion it hasn’t.

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50-year-old female NHS therapies manager. UK based, diagnosed five years ago after three years of symptoms.


My GP – I was with her for an hour. She was concerned that there was a bone infection. She was really good and referred me after ruling out bone infection.


I had a bad flare in my hip. It came on quickly in the space of a couple of hours and I couldn’t weight-bear. I called the out-of-hours doctor when I got home from work. I’d never experienced pain like it and I have had two children. I got up and fell down because of the pain. With hindsight I realise I’d had a flare a couple of weeks before that in my foot, but I had dropped something on it and thought it was that at the time.


I had no clue – other than perhaps a viral thing or an injury.


My GP did blood tests.

A rheumatologist did loads more bloods and x-rays. They were sending me for a heart scan, but by the time I was waiting for that appointment, they decided they were sure it was some form of arthritis, so I didn’t go for that.


At first they thought it was a trapped nerve and told me to take paracetamol/codeine. Then, because I couldn’t see properly and my heart was racing, they thought it was a bone infection. It was an atypical presentation so the rheumatology department didn’t know what it was.


• GP – definitely – she’d seen me at my worst. I had to phone my mum and dad and ask them to come and be with me. It was a nightmare just trying to get down the stairs.

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• Rheumatologist – no, not really – they were never there when I was not functioning. I didn’t feel they really believed me at first. My consultant was really nice but after the first time I’d been I kept a record of my flares and he didn’t want to see it. You feel they’re thinking it’s all in your mind. No one ever asked about the impact this was having on my life.

• Family – I’m a single parent and I had two primary school-age children, so life got quite complicated. I couldn’t guarantee being able to get anywhere or do anything. I don’t know what I’d have done without my mum and dad.

• Work colleagues – I’m very lucky with my boss, who couldn’t have given me more support. One of my staff is showing symptoms now and she says no one’s asked her about the impact on her life.

• Friends – the same – they would step in and help when I needed someone to pick up the children.• Other – I felt no one was really believing me.


After about six months I was diagnosed with a rheumatoid-type arthritis. I was never told it was palindromic rheumatism – it just appeared on a letter to my GP two or three years after. At that stage I was okay and just saw the consultant every year, but palindromic rheumatism was written on the x-ray form and then on a copy of a letter to my GP.


Internet sites – it was incredibly difficult to find anything that matched my presentations, but because I’d been sent to the rheumatology department that gave me a steer. I found palindromic rheumatism in my own searches and guessed that was what it was. It’s very isolating when you don’t know what you have or what to do about it, and when the big charities never mention anything that fits your symptoms.


Because I developed RA as well I have just used all the information relating to that. I was really stable for a few years and then the RA got worse. I started to get some more palindromic rheumatism flares too. One of the things I found helpful was attending a joint protection group that the occupational therapists ran. It was really practical information for all sorts of people with different types of arthritis. The principles are often the same. Although actually when you have palindromic rheumatism you can do all sorts of things to ease the situation but they don’t make a blind bit of difference. It would be useful to have good information to say palindromic rheumatism exists, you are

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not mad and it can affect every joint and then disappear again. Information about the drugs available would be good. Living with severe pain is knackering, but pacing myself doesn’t seem to help. Advice on exercise that isn’t focused on someone who is very disabled would be useful.


I don’t know – I guess if I hadn’t had such a bad flare at the beginning I’d have eventually gone to the GP. For a period of three months I didn’t do a full week at work. I’m not sure if I’d have made a connection with it being a type of arthritis if the GP hadn’t referred me to a rheumatologist.


• Change work patterns (e.g. go part-time) – at that time we didn’t have laptops and remote access – it was all quite new technology – but my boss sorted that out for me. I am a manager so that helps. If I’d had a lot of patients it would have been more difficult.

• Reduce or stop exercise – I used to run and I stopped because I had problems in my ankles. That really impacts on you. I hate feeling really unfit. I talked to my GP about whether I could start again, and he was vague about it. I found it hard to find good advice on appropriate exercise for my needs. The physiotherapist’s advice was pants. They are used to dealing with people who are really disabled. I found that incredibly frustrating – the exercises they provide are about slight movements.

• Change diet – no – I think there’s some really dodgy advice about food and I know someone who went on a really restricted diet and it harmed her.

• Give up hobbies – no, other than exercise.• Pace myself – I have no choice about this as I’m a single mum.


• Paracetamol/codeine – I had a terrible reaction to this.• Non-steroidal anti-inflammatory drugs: diclofenac – I used to use this for bad flares and it did control it a

bit. I didn’t take it all the time as they have a bad impact on the stomach, and the flares only used to last 48 hours. So I would use my judgement depending on where they were.

• Disease-modifying drugs: sulfasalazine – I was on the highest dose of this for three to four years and was symptom-free. Then I got the flares again and my RA symptoms worsened so I’ve been on methotrexate too for about 18 months. I have had no flares since then.

• Complementary or alternative therapies: yoga. Everyone wants to share their miracle cures. I had to change my dentist because I got sick of him recommending a type of vinegar.

• Pacing myself – learning about this was really useful on the joint protection programme, but for me that’s a daily thing, not long-term. For me it’s about taking care during each day to make sure

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I get some breaks and don’t rush around all the time. I found it useful to cover fatigue as I hadn’t realised it was part of arthritis. You have to take some responsibility for yourself.

• Talking therapies – no, they haven’t been offered and no one’s asked me about my life. It would be interesting to know if that’s different now.

• Pain management groups/clinics – I attended a useful joint protection programme.


They would come on quickly but I got good at recognising the signals. More than once I’d get up in a meeting saying I had to leave immediately as I had a 25-mile drive home. You’d know something didn’t feel quite right. There would be a nagging feeling in the joint and I’d know it was coming. It wasn’t pain exactly, just the need to move around. I could have three different joints affected at the same time. At first I was getting attacks every couple of weeks and then they got closer and closer together. They were not necessarily in related parts of the body. The ones in my shoulders tended to last longer and I never quite recovered before the next one. For a time I didn’t have a day without a flare, but that was all before I was being treated. Without treatment I feel I’d be completely disabled.


I’ve never known what brings flares on. There appear to be no links to how busy I am or what I’ve eaten, etc. I’m not saying there isn’t one, but I’ve never known what it might be. I’ve joined a gym and have managed to do yoga every week even when I was unwell and all I could do was lie down. It’s helped me keep supple and get some movement back. I used to get flares in my shoulders all the time but now I have got 95% movement back and I’m sure it’s down to yoga.


I think so – it was quite difficult a couple of years ago when everything started to come back. That knocked me back quite a bit. I thought it was under control. I now wonder if I’m going to work my way through all the medication options and it’ll keep coming back. I had a false sense of security.


• GP – I feel supported and I think she understands. I see her for medication reviews – she’s supportive and pragmatic.

• Rheumatologist – yes – I have a new consultant and he’s really nice. He doesn’t refer to palindromic rheumatism in his letters and I’ve got the feeling he doesn’t really believe in it, but I

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don’t know. He’s focused on the RA. They never ask about how this affects me. The specialist rheumatology nurses give you a little more time and they’re helpful – they have a helpline and get me quicker appointments when I need them, but again they never ask how it’s impacting on your life. They’ve never asked how I’m coping with the children. It never occurs to them and then they wonder how people with long-term conditions get depression.

• Family – they’re still there supporting me. I shouldn’t have to rely on them though – my parents are in their 80s. My children have had to learn to do things for me. My son has been cutting the grass since the age of 10.

• Employer – yes. It doesn’t really cause difficulties now, but when the symptoms came back I had a new boss and had to tell him. He was fine and left me to get on with it. They’re not really engaged as long as I get the work done, but my previous manager was brilliant – I could not have asked for more support.

• Work colleagues – I tend to tell people I’ve got it because it makes things easier. My PA has had to make all sorts of rearrangements when times are difficult.

• Friends – yes. • Other people with palindromic rheumatism – I don’t know anyone, but I do know someone with arthritis.


I got severe rheumatoid arthritis really quickly. It started to develop about three months after my first symptoms. I have had no depression.


I think I just have to take it as it comes. My dips a couple of years ago made me re-adjust my thinking. The likelihood is this will get worse again at some point, so I try to be a glass-half-full person and say when that happens we’ll look again at medication. In some ways it was helpful to go through that because it made me rethink and prepare. And of course no one can tell you when or how it will change – so you have to live with the unpredictability. I know there’s a lot of medication I’m not on yet.


I would like to know what causes it – is it just bad luck or are there particular triggers? And also why is it that some people develop RA and some don’t? Is it really two different conditions? Or are people with palindromic rheumatism guaranteed to get RA? I think my RA accelerated at a much greater

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speed than you normally see – I went from not having it at all in August to having to get up two hours before I wanted to leave the house in December. Research into better treatments that will work for this specific condition would be good. And there should be more information on what other people experience. If I was in a different sort of job I’d be stuffed.

48-year-old female nurse. UK based, diagnosed three years ago within months.


My GP.


Originally I felt I had something wrong with my arms and I went to my GP with the pains. I’d been unwell prior to that and perhaps had a miscarriage – we’d not checked it out. I just carried on through and put my illness down to that. It was all mixed up. Only looking back do I wonder if it was significant. I do wonder if the hormonal changes might have been a trigger – people have said perhaps palindromic rheumatism comes as a result of hormonal changes. I thought it was my menopause as things had started in that area too. It was all mixed in. It started differently from the way it later developed. It was all very quick.


I’d looked up something online – I thought it was some rheumatological thing.


I was sent for blood tests. Suddenly my hand swelled up and I couldn’t move it and it was very painful. I went to an out-of-hours surgery to try and get some painkillers, it was so bad.


My GP thought it was another condition, but it was something older people normally get, so it didn’t seem right for me. After I’d had the swelling, she thought it was RA and referred me to a consultant. By the time I went to see him it had all gone. The rheumatologist diagnosed palindromic rheumatism straight away because of my bloods and my rheumatoid factor. He told me to go away and look up palindromic rheumatism. He’s a funny old man.

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• GP – sometimes I felt it was a bit slow, but I just think that’s the way they work. She definitely took me seriously and we discussed whether it could be the thing I thought. It helped having the big flare-up quite quickly and it was visible. She did exactly what she was supposed to do and put in a quick referral, saying it was suspected RA, so I got seen very quickly.

• Rheumatologist – he didn’t have an in-depth understanding. I got the impression he was quite shocked by how frequently I have the flares, but it does vary a lot. For some people it’s every few months but for me I wouldn’t go a week without one.

• Work colleagues – they just ask where it hurts today, because the place and intensity varies from day to day.


Months.


• Rheumatologist – he told me to go away and find out for myself. He said I should keep a diary of how often I got flares. I found doing that quite depressing. When he saw the diary and the frequency he seemed quite shocked – I was getting something every day. It was moving around, from joint to joint.

• Internet sites – I found out all I could via the internet. I found out about drugs myself and I found out about the condition myself. I read up whatever I could find.


I felt there was plenty available. I found support groups straight away. I can’t spend all my life talking about this one aspect of it, but I know support is there if I need it.


• Change work patterns (e.g. go part-time) – I haven’t, but once I started taking methotrexate I went to the occupational health department to discuss whether I was compromising my safety. We have a rule that we can’t have open TB or measles on the ward. So we don’t normally come

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across very infectious people. But currently there’s a move to combine our ward with an infectious diseases ward – we’re on different levels, but we rotate. Occupational health said I mustn’t work on infectious diseases. My work colleagues were a bit jealous and wondered what they could say they had. I was working with an HIV patient I’d worked with a lot. Then I found he had flu and diarrhoea. But what do you do? I’d been in there for the last week, and I was fine. I am more conscious of risk, but half the time there’s nothing I can do. You don’t even know there is infection around.

• Reduce or stop exercise – I never did any exercise, but this has affected my ability to do some things. I noticed last year on holiday we normally take bikes and I couldn’t get up the hills any more or manage a long trip. My knees just aren’t strong enough. I was constantly having to get off the bike. I didn’t have the strength – I wasn’t out of breath. But that’s not having a huge impact on my life.

• Move house – no but I am aware of the link with RA – I’m a classic risk and I do wonder if we have room for adaptations in the future.

• Change diet – no I don’t bother with such things. If there was proven research maybe I’d do it. • Give up hobbies – no – I’ve carried on with things like gardening, but not the heavier work because I don’t

have the strength. But I can still plant out.


• Non-steroidal anti-inflammatory drugs: ibuprofen, diclofenac. • Disease-modifying drugs: hydroxycholoroquine, methotrexate, sulfasalazine – lots of people seem to be

very against medication. My rheumatologist started to talk about medication quite quickly. He did give me leaflets for the drugs. In some ways he’s perfect for me – he doesn’t tell me what to do but lets me make the decision, partly because he understands I do know about things. Is that because of my job? I didn’t jump straight in – I was hesitant and had to weigh up the pros and cons. I looked at the side-effects and potency and started at the bottom and worked up. He put them in order and I did my own research. Each time it had to be at the point where I couldn’t carry on as I was. I started with sulfasalazine – my mum took this for ulcerative colitis. It took me a few months to cash in the prescription. I was to take it for so many weeks and increase the dose. A few days after increasing it I came out with a rash. So I stopped straight away. I had a few months off and then tried hydroxychloroquine. I’ve been taking that ever since. Within three months I was pain free and it was working well. Then after about a year things started creeping back, so earlier this year I made the decision to take methotrexate. I was hoping not to take this because of the side-effects and the fact that it reduces your immunity, as I work with people who have diseases. I’ve had no side-effects and it’s working well. I might get a little twinge and if I’ve done too much I’ll ache. The other day I mowed the lawn and this time last year I wouldn’t have even attempted it. But for how long will it last?

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There were pains I could live with and ignore – low-level aches – but these were interspersed with big flares that would mean I couldn’t move the affected area. The pattern wasn’t always the same, but generally it was a case of waking with a residual of the previous day’s pain and progressively getting better till I’d be almost pain free by lunchtime. Then as the afternoon wore on around 5 it would start wherever it was going to attack that day, and then come on very quickly, continue through the evening and if it was one of the bad ones it would be hard then to get to sleep. The last few hours of my shift I could maybe hardly walk or be unable to use a hand and have to drive home one-handed, changing gears with the palm of my hand. I’d go to bed and if it was really bad in my shoulders I’d need to take painkillers to allow me to sleep. They never took the pain away but they might take the edge off to allow me to sleep. By the morning I’d have residual pain and stiffness. Occasionally the flare in the afternoon would be quite mild. Every now and again it’s different and that throws you. When I’m working nights it can be different, so sleep obviously affects it for me. I have two sleep shifts and that seems to throw things out.


I couldn’t say exactly what was bringing them on, but I did notice over-exertion was a problem. When my kids did a fun run I had to leg it to get to the end of course so I could see them finish. I walked a mile very quickly and I had flares in my hips later that day. When on holiday I was on hydroxychloroquine and had no pain, except for a flare in a hip, which seemed to have been caused by a lot of walking on one day. At other times I don’t do anything overly physical anyway. I noticed in work if we have a lot of intravenous drugs to give, which involves pushing and pulling syringes, then I’ll get a flare in my hands. But often if I do nothing at all I seem to stiffen up. Things seem to seize up, but again if do too much I get a big flare. At work you can’t say that you won’t be able to do something because it’s too much for you. There are some things you can avoid or ask for help with, like opening bottles. I can’t break down cardboard boxes – I don’t have the strength.


Yes I do feel in control. It’s partly the drugs and partly knowing what it is and what I can do. The drugs are doing most of the work but they are not actually wiping it out. I’ve got control by taking the drugs. That’s how I try and help my patients feel – I look after a lot of immuno-suppressed people with HIV. We have some who won’t take drugs because they don’t want them to rule their lives. But the ones who don’t take the drugs are controlled by the disease and are always sick and do die. Those who take the drugs get on top of the disease and it’s empowering. We can see whose disease is actually ruling their lives and who refuses to let that happen. The latter are alive today.

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• GP – no – I don’t go to see her much and I get repeat prescriptions.• Rheumatologist – we don’t really chat.• Family – yes – they’ve seen how it affects me. And my mum has seen me when I’ve been hobbling – she’s got

into the habit of asking which bit of me hurts today. • Partner or spouse – yes, she’s been there through thick and thin.• Employer – it’s a fairly good NHS trust with a proper occupational health department that plays by the rules.

They said if I needed to I could go back to them as it’s classed as a disability. • Work colleagues – they are very supportive and will give me foot massages, etc. They know I’m not swinging

the lead – I do carry on and don’t have time off. They’ve seen it so they understand. • Friends – a lot of my friends live away from me and don’t actually see it. They’re a bit unaware.


It feels better now I’m on methotrexate. I was always worried and wondered how I would know when it turned to RA. The consultant said I would know because the pain wouldn’t go away. At least now I’m on the right medication for when/if that happens. So that’s taken a little bit of worry away. I feel as though I’ve got my life back now, but I’m always conscious of how long I can carry on doing my job. Six months ago I was thinking I might have to find a less hands-on job, maybe in a clinic without physical care. That’s what I’m aiming for eventually, but I was wondering how long I’d have before I had to. Now I think it’s not looming so much, so I’m going along with the plans I had originally, had I not had palindromic rheumatism.

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Written in-depth responses

A few respondents sent written answers to the in-depth questionnaire. They are reproduced below. Unanswered questions are left out.

46-year-old male manager. Not UK based, diagnosed two years ago after two years.


My GP.


Started with what I thought was tennis elbow, which after a month did not improve. The GP prescribed a one-month course of an anti-inflammatory (Brufen) . Eventually it went away (approximately three months in total). Soon after my thumb started swelling and was painful for no reason.


On reflection, I put the tennis elbow down to lifting a heavy suitcase and the thumb swelling to playing golf often.


Initially no tests.

What did your GP or health professional think was going on? What did you think?

As more persistent occurrences of pain and swelling of my wrists, fingers, hands and hips followed, the GP’s thoughts were rheumatoid arthritis. A full blood test revealed an elevated rheuma factor and low levels of vitamin D. The GP directed me then to a rheumatologist. I thought it was all overkill and believed I was suffering from tendonitis


• GP. • Rheumatologist.

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Approximately two years.


Rheumatologist.


None.


• Give up hobbies – after. • Pace myself – after (stop doing things I know will make the symptoms worse).


• Pacing myself.• Non-steroidal anti-inflammatory drugs (NSAIDs) don’t work in my opinion and just cause stomach upsets.• Disease-modifying drugs (DMARDs) do work and lessen the symptoms to an extent (I used Plaquenil) but the

side-effects (constant nausea and 3kg weight loss over four months) do not justify the benefit in my opinion.


Symptoms vary from days to two to three months. For the last six months or more I have not been symptom free.


To date, I have not noticed any pattern or trigger.

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Yes and no. The rheumatologist gave me two options: take DMARDs and suffer the side-effects or take NSAIDs (Feldene 20mg) when the pain is too much, which also has serious side-effects (upset stomach, tummy pain and diarhoea) after two to three days. Now, I decided that none of the options is viable, hence having the feeling of no control. Having control I believe is accepting this is how life now is and suffering the pain in silence and getting on with it, so to speak.

To help you live and work with palindromic rheumatism, where do you get support?

See above.

In your opinion, now that you’ve had your diagnosis, who understands how your condition affects you?

• GP. • Rheumatologist.• Partner or spouse.• Friends.


Perhaps coincidental, but I notice that I get the cold, flu, etc. easier and more often now.

59-year-old male engineer. Not UK based, diagnosed two years ago within first 12 months.


The internet and my RA doctor.


Joint pain, one to three joints, no patterns.


RA was the first mis-diagnosis.

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Both, high RA factor, x-rays clean.


RA at first, then a new doctor said palindromic rheumatism.


• GP. • Rheumatologist – my first RA doctor was clueless. The second listened, and nailed it in 30 minutes.


Internet – Google is my friend.


Good for now, still in the learning mode. Not sure if shoulders are PR yet or not.


No real changes, very mild right now compared to what I read. Shoulders, if PR, are the nightmare. Hands and other joints are manageable.


Shoulders took morphine, all others no big deal.


One to three seconds, three minutes, 48 hours on hands, shoulders…if I have PR for a week, then it takes months to recover. Can go months with no symptoms at all. After a hard hit on my wrist (48 hours) can have aftershocks all over my hands, one to five seconds long for a couple of weeks.

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No clue yet.


No control at all!


I’m good right now.

In your opinion, who understands how your condition affects you?

ME.

52-year-old female software developer. Not UK based, diagnosed two years ago after 25 years of symptoms.


My GP.


At age of 24–25, recurring severe pains in the shoulder (left and right at different times, a few times a year) – this was never diagnosed – the symptoms were fleeting and usually gone by the time I got to the doctor. I think they thought it was in my head.


I didn’t really have a clue – I thought I was out of shape, and just had joints sensitive to extra stress. Eventually, I started getting swelling, pain, and stiffness in my fingers and toes. I attributed this to getting old (I was in my mid-30s!), but that and the palindromic symptoms started getting worse. I had some theory that it was RA, and doctor sent me to a rheumatologist. She laughed, because my blood tested negative for RA. She put me on arthrotec, which helped not at all.

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They did give me blood tests – it did show inflammation, but my rheumatoid factor was always (and still is) negative.


I was pretty sure it was RA as they finally invented the internet and it became easy to research; my doctor didn’t know what to think. At that point I was self-dosing with ibuprofen, which was the only thing that provided any relief.


Well, the RA idea came out of discussions with work colleagues and internet research. A woman I worked with had RA, and she was on Plaquenil. Another woman my husband worked with also was on Plaquenil for RA. Eventually, I told my doctor if he didn’t give me Plaquenil I’d hang him from the roof by his heels. He did, and WOW. Complete remission for about seven years. But no one wanted to officially diagnose me with RA because of the negative blood test and symptoms that didn’t quite align with classic RA.


25 years!!! Unfortunately, the palindromic symptoms came out of remission by my late forties. (The RA hands and feet pain thankfully remains in remission). Not nearly as bad as they were before the Plaquenil, but still there. That drove me to back to a (different) rheumatologist. After four visits, I scolded him for not paying attention to me, he finally listened to my symptoms, and pronounced that it sounded like palindromic rheumatism. When I looked up what that was (in all my years of research I hadn’t run across it), hallelujah! I was a textbook case.


Mostly from the internet.


I’m always on the lookout for new treatments, and also what seems to trigger the episodes in other people. So far I haven’t discovered any pattern in my own life.

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I definitely pace myself, as I do find if I overextend muscles or tendons (especially tendons), it can bring on an attack. And I never had children, one reason (although not the only one), was throughout my thirties was when the pain was at its worst, and I was afraid I wouldn’t be able to care for babies or small children.


Plaquenil has really done wonders for me, although I still get fairly frequent and painful episodes. For those times, I take ibuprofen to take the edge off the pain, and if it’s really bad or I really haven’t got time for the pain (like vacations) prednisolone is my go-to. I also find immobilising the joint (if I can) reduces the severity and longevity of the pain.


A typical attack in a single joint lasts no more than one to three days (depending on the joint). They come in clusters and I may get two to three episodes a week over the course of three to four months. By that time I get fed up, and wheedle the doctor into giving me a course of prednisolone which may knock it all out for a few weeks to many months. But I can also get isolated attacks in a single joint – and then get no more attacks for weeks at a time.


Overstretching or working a joint (especially tendons) seems to bring on a flare. I do find that I seem to be more prone to tendonitis. Getting a real illness (like a bad cold, or flu) seems to temporarily cause a remission, although I may get a flare when the illness is over. And while emotional stress doesn’t seem to bring on a flare, it can exacerbate an existing flare. I’ve never found a link with food or my period, but the flares did get worse when I stopped taking birth control pills.


Pretty much, as long as I can stay on the Plaquenil and can take prednisolone periodically and my stomach can still tolerate ibuprofen. Because I’m sero-negative, I feel like every doctor I go to I keep having to provide proof of my condition. But I do get depressed when I’m flaring for a few weeks.


My husband is my rock. And my friends let me vent.

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I think my GP does (finally), the rheumatologist (I should hope). And my family.


RA, assuming we’re considering these separate diseases (I do). I have chronic tendonosis in my right hip (hip abductor tendons), and I get a lot of tendon issues all around. Not sure if that is related to the PR, or because I back off exercise a bit (so the tendon is doing the work of weakened muscles).


I have a theory that PR seems more closely related to lupus than it is to RA (tendons=connective tissue). And I also started smoking very young (13, although I quit at 29). Since no one else in my family has PR (although there are a couple of aunts with mild RA coming late in life), I often wonder if the smoking brought it on in some way.

68-year-old female retired corporate trainer and professional singer. Not UK based, diagnosed five years ago within four days.


My GP.


In the middle of the night, an excruciating pain in my left shoulder made me cry out in my sleep, waking me and my adult daughter sleeping in the next room. The only thing we could think of is that it might be a heart attack so she called the paramedics, who did heart tests and found nothing, but sent me to hospital. The doctor there did tests and x-rays and diagnosed an injured rotator cuff.


I had no idea but I knew it wasn’t my rotator cuff because it came and went.

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Primary care doctor saw me right away, took blood and urine for tests. but also told me to hold my hands out horizontally flat in front of me and noted that my fingers pointed to the outward sides instead of straight ahead.


She agreed that I didn’t have a rotator cuff injury and after looking at my hands, said she suspected rheumatoid arthritis. She made me an appointment immediately with a specialist, who had me get my hands x-rayed and bring in the x-rays for my appointment, and diagnosed me with what was then called palindromic rheumatoid arthritis. I had no clue as to what might be wrong; I trusted my doctor to figure it out because she was so intelligent and knowledgable.


• GP – she listened to me, was extremely concerned, and seemed to understand the severity of my pain.• Rheumatologist – also intelligent and knowledgable and confident in her diagnosis of PRA, explaining it to

me in detail and acknowledging there was a high level of pain we would need to deal with.• Family – my daughter knew from the first attack at night how much pain I was in; my sisters and the rest of

the family knew something was very wrong. I’d lived a long time with a severe ankle issue and deteriorating knees so they all knew I wasn’t a weinie when it came to pain.

• Partner or spouse – N/A (thank goodness!).• Work colleagues – my position fell under HR and my manager and coworkers were friends as well as work

colleagues so they only had sympathy.• Friends – wonderful friends who were very supportive.• Other healthcare professionals – my doctor’s office staff seemed supportive.• Other – I was lucky to have PRA diagnosed within four days after my first pain attack and never felt anything

but sympathy and support from everyone. The truth is that I have been in a learning curve ever since the diagnosis and they can only understand what I can tell them. I didn’t know my depression was one result of the pain, or that fibromyalgia was in there doing its part to create havoc in my body, or lots of other things I’ve learned and some I’m still discovering.

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How long did it take to be formally diagnosed after you first sought help?

Four days (lucky me!).


• GP – she didn’t know anything about it but was interested in learning. • Rheumatologist – she gave me the only info I had to start with, most of it verbal.• Other healthcare professionals – I’ve never met another healthcare professional who knew what it is until I

told them. When I moved from New Mexico to Georgia, the rheumatologist didn’t seem to know anything about it and kept insisting I didn’t have it because my joints didn’t turn red and swell during an attack. My latest rheumatologist doesn’t seem to know very much about it either. Even though I really like him and his treatments have been effective, he keeps saying I have fibromyalgia and polymyalgia rheumatica which I do not have, according to all the symptoms. I decided after the last visit I’m going to make a real effort to educate him. He’s a great guy, we get along famously, and he seems to be constantly learning so he just needs some good information, which I’m hoping we can give him with this survey.

• Other people with palindromic rheumatism – I met my best friend’s sister-in-law when she came to New Mexico from Indiana for my friend’s wedding. I had an attack in my jaw at the reception which opened the subject of PRA and it turned out she had it, too. It seemed miraculous to talk with someone who suffered the same painful episodes that I did and I asked her a lot about her personal experience with it before I had to leave with the pain.

• Internet sites – have looked up info here since the start. I try to go only to sites I know are credible, and take less verifiable info with a grain of salt.

• Charities that support people with palindromic rheumatism – I know of no charity; am very thankful for the UK website.


I’d really like to see how blood test numbers compare. My rheumatologist says my RH factor (if that’s the right term) is way off the charts, ‘too high to indicate RA’ (?). He says my CRP is also exceedingly high every time he’s checked it; I wonder if that’s normal with PRA. I had to come off the methotrexate two weeks ago and for the last two days I’ve had horrible pain from my neck to my knees; I can’t get out of bed and can hardly walk to the bathroom, even using a walker. I need him to try something else right away so I’d like to know what others have taken when they couldn’t take methotrexate.

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• Give up work – after diagnosis.• Change work patterns (e.g. go part-time) – after diagnosis.• Change job – took early retirement after diagnosis. • Change plans for having a family – already had mine.• Reduce or stop exercise – after diagnosis.• Move or adapt your house – moved to be near family who could help.• Change diet – just happened after; no appetite when in pain.• Give up hobbies – gave up all of them after diagnosis; even reading requires too much focus lately and that

was always a given for me.• Pace myself – after diagnosis.• Other – since diagnosis I haven’t had the energy to maintain all my old friendships or to make new ones. I

just don’t want to dump my pain and problems on the dear people who love me. They insist that’s part of friendship, and that I was always there for them, but I just can’t make myself call, write or email them. Since this has been going on for almost five years, they have almost quit trying. My three sisters, my daughter and a couple of childhood friends visit and call and encourage me as best as I can be encouraged. Mostly they just try to get me to hope it will get better. I’m trying.


• Paracetamol/codeine – I have taken these and have a few pills left, hydrocodone acetaminophen 5-500 mg. It works really well, doesn’t seem to have any side-effects and isn’t addictive (habit-forming out of desire, but non-addictive according to credible web sources).

• Non-steroidal anti-inflammatory drugs: in the past I’ve taken ibuprofen, diclofenac and naproxen for knee problems; both knees were replaced (after PRA diagnosis), but I don’t find them effective for my pain.

• Disease-modifying drugs: methotrexate eliminated the pain almost totally for six months, but I suffered bad side-effects affecting my lungs and cannot take it.

• Biologic therapies, such as etanercept, adalimumab, infliximab – I think these are the Lyrica, etc. drugs advertised so much on TV. My rheumatologist says I won’t be able to take any of them based on my history of allergies and reactions to medicines. I have had all kinds of allergies since I reached adulthood: skin, food, chemical, plants of every kind, animals of every kind, even all insects (I have to carry an injection kit for that).

• Pacing myself – I should but any time I’m able to walk, move, shop, cook, clean, visit with friends, etc. I probably overdo it, but when the pain comes everything stops so I might as well do as much as possible when it’s possible.

• Talking therapies – nothing formal, but talking does seem to help when I have the energy. • Pain management groups/clinics – no, but I’ve been considering it. I’m just not able to get dressed and get to

appointments, so that seems to be just one more thing I’d miss.

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It really varies; definitely doesn’t seem to present any pattern. This week, I was in constant pain from Wednesday around 2pm until Fri around 4pm when it slacked off enough for me to sleep soundly for four hours. It came back around 9pm that night and then slackened off on my left side on Saturday around 7am and increased with full force on my right side at the same time. The intensity of the pain lessened again around 11am but continues. I probably didn’t have more than six flares during the previous six months I was on methotrexate, each lasting no more than a few hours with weeks in between.


I suspect stress – my experience seems to support this; I also suspect the weather, i.e. rain or any barometric pressure change, but I think that’s more my fibromyalgia than the PR. Certain foods seem to aggravate joint pain but I don’t think that it’s related to the PR.


Absolutely not, at no time, no place, ever. None.


• GP – no.• Rheumatologist – in general, yes, but not specific to PR.• Family – some, although recently I told them I thought they should do their own research online on PR and

fibromyalgia to better understand me. I’m the oldest sister and all our lives the others have looked to me for leadership and advice, and my daughter and twin adult grandchildren saw me as the primary breadwinner, the most wise, stable, level-headed one with a huge social life and many hobbies and interests who included them in all the fun and could be counted on to always take charge when things got tough. As my 29-year-old grandson said last year, ‘I just want my Mimi back’. All my family but one sister has told me that hearing me talk about my situation makes them sad; one sister said she just ‘couldn’t handle it’ and my daughter cries on the phone because she’s not here to take care of me and she can’t help me. I finally decided to start telling them how this makes me feel: I don’t tell you to make you sad; I tell you because I need to tell my family. After all, I have begun saying, I’m the one living it and if talking about it is too hard for you, just who am I supposed to talk to?

• Other – the forum seems like it could be a good one.

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• GP – not unsympathetic but no.• Rheumatologist – yes, makes it clear he knows how much pain I’m in and how depressing that is and how

debilitating the PR and the fibromyalgia are to me.• Family – somewhat but they would rather not think about it.• Friends – yes, the ones I have left.• Other – others online who have it would all understand as I understand the extent of their struggles to have

any kind of normal life.


As mentioned above, fibromyalgia for sure, and my rheumatologist says he believes I have something else undiagnosed. Always have had a multitude of allergies but some that affect my skin are decidedly worse.

52-year-old female former police officer, now unable to work because of her condition. Not UK based, diagnosed two years ago after three years of symptoms.


My GP.


First my shoulder felt like someone was ripping it out of its socket; then a few weeks later, my right wrist looked like I had broken it, then two days later the left wrist, then three days later right ankle, then left ankle; then a month later back to my shoulder feeling like it was being ripped out of my arm socket.


I had no idea!


In the beginning they took x-rays – a couple of years after the symptoms continued they did blood work.

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My GP thought I was spraining my wrists, etc. Then they thought I had bursitis and tendonitis.


• GP – she was sympathetic and kept referring me to other specialists.• Rheumatologist – didn’t get referred to him until blood work showed positive rheumatoid factors.• Other healthcare professionals – orthopaedic surgeon said nothing was wrong, but suggested I attend

physical therapy.


Three years.


• Rheumatologist.• Other people with palindromic rheumatism who I found online or through social media.• Internet sites.


I don’t think the doctors really believe the pain I am in. They are very reluctant to prescribe pain medication, even though it at least takes the edge off the pain. During flares, especially the ones that cause me pain to the point I am in tears and crying for 18 hours due to the severe pain in the joint just when I breathe, I wish there was something they could do to numb the shoulder temporarily just so I can get through the 18-hour debilitating flare. I can’t always get in for an appointment when a flare comes on, they usually say ‘we’re booked today, but we can squeeze you in late tomorrow’...and usually by then the flare is down to a tolerable pain level.


• Give up work.• Reduce or stop exercise.• Change diet – tried all kinds of diets to see if that would help; gluten-free; meatless, etc. Nothing seemed to

make a big impact.• Give up hobbies.• Pace myself.

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• Disease-modifying drugs: hydroxycholoroquine, methotrexate.• Pacing myself.• Pain management groups/clinics.• Other – prednisolone (for inflammation). Vicodin (for pain).


The severe shoulder ones last about 18 hours of severe pain, then one to two days of tolerable pain; the wrists, ankles, elbows usually last one to two days but tolerable pain with pain medication. I now have rheumtoid disesase as well, so I have pain and such in my fingers and toes. I will have maybe one to three days of no pain out of every month.


Doing household chores or yard work usually brings on a flare even if I pace myself. Sudden change in weather also makes it bad, especially damp weather, whether it’s rain, or snow or humidity.


NO.


• GP. • Rheumatologist.• Family – somewhat anyway....• Friends.• Other people with palindromic rheumatism.


I don’t think anyone does....for example, I had a blood blister-type rash on my arms every once in a while (once or twice a month). I asked my rheumatologist what it was and if it was medication or disease-related... his response, ‘Hmmm; never seen that before; I don’t think it’s related, but I don’t know what it is’ – no tests, no referrals, no nothing.

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Rheumatoid disease.


I don’t know what’s worse, the pain of all this, the fact that no one understands, or that some doctors think it’s all in your head. It’s a very disheartening disease...and one I wish I didn’t have!!

69-year-old retired female hairdresser/secretary. UK based, diagnosed two years ago after two months of symptoms.


My GP.


In June of 2011 I picked up a peculiar virus, which put me out of action for a couple of weeks, followed by another virus that was doing the rounds, and this attacked my nervous system. Others in the area also had this experience. This was then followed by what I thought was a chest infection and on contacting my GP I was prescribed a course of antibiotics. Shortly after all this I developed an agonising pain in my left arm so I went to the local GP who said he thought it was some form of myalgia and prescribed naproxen.


I thought it was some kind of fibromyalgia but it was gradually spreading with intense pain into different parts of my body, e.g. legs, arms, back, etc.


Not initially. Eventually the pain became so unbearable that I asked to be referred to a rheumatologist.

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On my first consultation with the rheumatologist he diagnosed palindromic rheumatic syndrome.


• GP – didn’t really seem to know what the problem was.• Rheumatologist – seemed to know but didn’t explain much to me.• Family – thought it was something peculiar that they had never heard of before.• Partner or spouse – very understanding.• Friends – didn’t understand.• Other healthcare professionals – not much understanding.


About two months.


From the internet mainly.


• Reduce or stop exercise – unable to exercise at the gym now.• Move or adapt your house – certain adaptations have been made.• Change diet. • Give up hobbies – given up almost everything social.• Pace myself.


• Paracetamol. • Paracetamol/codeine. • Naproxen.• Methotrexate.• Entanercept, prednisolone and kenalog injections.

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My symptoms have always been present somewhere in my body. The pain still moves around from place to place. However, the rheumatologist is now diagnosing rheumatoid arthritis.


Methotrexate was giving me a three-day flare-up every week before I stopped it. I am now being asked to take it again along with etanercept.


Definitely not.


• Partner or spouse – very supportive. • Local hospice for people with life-limiting illnesses has given me a lot of support of late.


• Rheumatologist and rheumatology nurses.• Partner or spouse.


Yes – I have a large polyp in my colon that requires surgery but I cannot face it. My skin is getting old and wrinkled very quickly because of the medication and I look really poorly.


It is impossible for us to plan a holiday or even an outing as I never know from oneday to the other whether I will be well enough to cope.

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53-year-old female office administrator. UK based, diagnosed ten years ago after two years of symptoms.


• The internet.• My GP.• Friends and family.


Individual joints would flare up and cause excruciating pain, which would then subside and the joint would recover. Multiple symptoms, which felt like flu e.g. whole-body stiffness, grit in my eyes.


I thought possibly RA or fibromyalgia.


Blood tests from GP. X-rays privately.


He thought possibly RA. Private consultant knew it was PR immediately. I accepted the private consultant’s diagnosis.


Scores out of 10 where 0 is low and 10 is high.

• GP – 5• Rheumatologist – 10 (private)• Family – 10 (immediate family)• Partner or spouse – 10• Work colleagues – 0• Friends – 3

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About three months.


• Rheumatologist – yes (private).• Other people with palindromic rheumatism who I found online or through social media – a good website

was available from 2006.• Internet sites – yes.• I didn’t get any information – found a little but it was a challenge.


I would like professional advice and support on pain management.


• Change work patterns (e.g. go part-time) – yes working hours reduced from 35 to 28 and more recently to 21.• Reduce or stop exercise – have had to modify exercise.• Move or adapt your house – yes – moved to accommodation on one level.• Change diet – yes. • Pace myself – yes, significantly.


• Paracetamol – not effective at all.• Paracetamol/codeine – tried but caused sickness and constipation.• Non-steroidal anti-inflammatory drugs: tried ibuprofen, diclofenac, naproxen but the only anti-inflammatory

I can tolerate is etoricoxib.• Disease-modifying drugs): I use hydroxycholoroquine.• Complementary or alternative therapies (e.g. yoga, meditation, herbal remedies) – I tried herbal remedies,

acupuncture, physio, shiatsu – I’m now trying core muscle-strengthening exercises.• Pacing myself – I do this all the time.

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Varies throughout the year. I can go through phases when I can be taking three flare-ups in a week lasting two to three days each and the pain is almost unmanageable. Or I can go through phases where the flare-ups can be one a week and are very manageable. Any flare-up rarely lasts more than two to three days.


Being too busy, too stressed, rushing about, physical exertion, certain physical movements e.g. closing heavy car doors or reaching to high shelves. Even carrying a heavy handbag is impossible. I have learned to try to avoid all of these.


NO!


• Family.• Partner or spouse.• Employer.• Work colleagues.• Friends.• Other people with palindromic rheumatism – via internet.


• Family.• Partner or spouse.• Work colleagues.• Friends.

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Digestive and bladder problems.


My brain is buzzing with the many challenges I have had to deal with over the years and this could be a book. Suffice to say I feel unsupported by any health care professional I have come across in relation to my PR.

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194

PIcture evidence

Some respondents kindly supplied pictures of their flares, included below.

Arthritis Research UKCopeman HouseSt Mary’s GateChesterfieldS41 7TD

www.arthritisresearchuk.org

A company limited by guarantee no. 490500Registered Charity England and Wales no. 207711, Scotland no. SCO41156

Documents

living with palindromic rheumatism