Paul Howard March 6,2020

Lupus & Coronavirus (COVID-19)lupusuk.org.uk/coronavirus/

Updated (20/03/2020)

The UK has now advised against all “non-essential” travel and contact with others.There are recommendations for people with significant health conditions(including SLE) to take additional precautions such as self-isolating for 12 weeks.

If you are in crisis as a result of these new measures, please contact LUPUS UK bycalling 01708 731251 or emailing headoffice@lupusuk.org.uk. Please note; if youhave an urgent medical crisis you should contact 999 or 111 as appropriate.

The following article has been updated to reflect the changing guidance. Thesituation is likely to change further over the coming days and weeks. Please checkback here regularly for the latest updates as guidance will change.

Currently there is little known about the virus in lupus. Also people with lupus oftenhave very different symptoms from each other and we cannot give any more specificdetails on a case-by-case basis at this time. We appreciate that some guidance maytherefore be very generalised.

What is coronavirus (COVID-19)?

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A coronavirus is a type of virus. As agroup, coronaviruses are commonacross the world. Typical symptomsof coronavirus include fever and acough that may progress to a severepneumonia causing shortness ofbreath and breathing difficulties.

Novel coronavirus (COVID-19) is anew strain of coronavirus firstidentified in Wuhan City, China.

How is it spread?It is a new strain of virus, so it is notyet known exactly how thiscoronavirus spreads from person toperson. Similar viruses are spread incough droplets. It’s very unlikely itcan be spread through things like packages or food. Viruses like coronavirus cannot liveoutside the body for very long.

What is the risk of coronavirus in the UK?The UK Chief Medical Officers have raised the risk to the UK to high. You can read an up-to-date report of risk HERE.

What are the signs and symptoms of coronavirus?– a cough (in many cases this has been reported as dry and persistent)– a high temperature– shortness of breath

But these symptoms do not necessarily mean you have the illness.

The symptoms are similar to other illnesses that are much more common, such as coldand flu.

Generally, coronavirus can cause more severe symptoms, such as pneumonia, in peoplewith weakened immune systems, older people, and those with long-term healthconditions.

Does my lupus place me in the ‘high-risk’ group for coronavirus?Data collected so far suggests that people of all ages are at risk of contracting the virus.However, as with most respiratory illnesses, it is likely to be the young, old, and thosewith chronic health conditions or weakened immune systems who are most at risk onceinfected.

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Systemic Lupus Erythematosus is a chronic health condition and many people living withthe condition are likely to have a weakened immune system, most commonly as a resultof immunosuppressive medication they are required to take. This means that manypeople with a diagnosis of lupus would be considered as ‘high-risk’ if they contracted thevirus.

Which lupus treatments are immunosuppressive?Many medications used in the treatment of lupus help to control lupus activity bydampening down the immune system. The following medications weaken your body’simmune response to infections (please bear in mind that this list is not exhaustive):– High-dose oral steroids (20mg or more daily) [Prednisolone]– azathioprine [Imuran]– methotrexate– mycophenolate mofetil (MMF) [CellCept]– cyclophosphamide [Cytoxan]– ciclosporin– rituximab [Rituxan]– belimumab [Benlysta]

What about hydroxychloroquine?Unlike the medications listed above, hydroxychloroquine is known as animmunomodulatory drug and is unlikely to limit your body’s response to infection.

Scientists are currently investigating whether hydroxychloroquine may also offer someprotective benefit against the coronavirus (COVID-19). Early studies in China haveindicated that chloroquine (a similar anti-malarial historically used to treat lupus) hasaided the recovery of patients infected with the virus. It is believed that the activity ofhydroxychloroquine on viruses is probably the same as that of chloroquine since themechanism of action of the two molecules is identical. Studies are ongoing, therefore weare recommending that anyone taking hydroxychloroquine should continue on it unlessotherwise advised by their doctor or nurse specialist.

Why isn’t lupus specifically named on the list of conditions in the Governmentguidance?The list published by the Government of groups with an increased risk of severe illnessfrom coronavirus (see HERE) is taken from the NHS annual influenza vaccinationprogramme (see HERE). The Government’s coronavirus guidance fails to include anessential line; “This list of conditions is not definitive. It’s always an issue of clinicaljudgement.”

The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) has been in contactwith Alex Sobel MP who has agreed to table a parliamentary discussion requestingadditional clarity from the NHS and Public Health England for people with autoimmunerheumatic conditions in relation to this guidance. We’ve requested a morecomprehensive list of ‘significant health conditions’ to be published with improvedguidance.

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“The Clinical guide for the management of rheumatology patients during thecoronavirus pandemic” published by the NHS on 16 March 2020 clearly states thatpeople with a diagnosis of systemic lupus erythematosus (SLE) are at a ‘high’/‘veryhigh’ risk from the virus. See page 4 HERE.

Should I stop taking my lupus medication(s)?It is advised that you DO NOT make any changes to your prescribed lupusmedications in an attempt to reduce your risk of contracting the virus. It is important toremember that if your lupus becomes active then this may also increase your risk ofpicking up infection. If you are concerned that you have developed symptoms of thecoronavirus then please take advice from your rheumatologist regarding whatmedication is safe to continue.

Should I still attend medical appointments?If you have a scheduled medicalappointment then your clinicshould contact you to inform youwhether your appointment will stillbe going ahead, and how. If youhaven’t heard from your hospital itis important to check with thembefore travelling to yourappointment.

The British Society forRheumatology has advisedclinicians to consider the feasibilityof providing remote consultations and implement this where appropriate to reduce theneed for patients to attend face-to-face appointments. This includes telephone clinicswhere your doctor or nurse specialist may call you rather than see you in the hospitalclinic. Different hospitals are drawing up separate plans so it is important that you checkwhat your local rheumatology department are doing.

Do I need to stay home from work/school and avoid public places?UK officials have announced that people aged over-70 or with ‘significant healthconditions’ should self-isolate for a period of 12 weeks (you can find the guidance HERE).

The list of ‘significant health conditions’ is the same as the annual influenza vaccinecampaign. It is NOT an exhaustive list of diagnoses but rather guidance of the peoplewho should be taking additional precautionary measures. People with a diagnosis ofsystemic lupus erythematosus should generally have the annual flu vaccine,regardless of current treatment or level of disease activity. Therefore, it is advisedthat people with SLE self-isolate for 12 weeks. It is not necessary to stay permanentlywithin the home during this period (i.e. you can go for a walk) but it is recommendedthat you avoid contact with others.

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What about people with discoid lupus, sub-acute cutaneous lupus, mixed connectivetissue disease (MCTD) or undifferentiated connective tissue disease (UCTD)?If you do not have a diagnosis of SLE you should check whether you meet any of theother criteria HERE. If you would not usually be invited for an annual flu vaccine, are noton immunosuppressive treatment and do not have a history of respiratory symptomsthen you may not be recommended to self-isolate at this time. If you are uncertain weencourage you to check with your personal medical team.

How to self-isolate

If there’s a chance you could have coronavirus, you may be asked to stay away fromother people (self-isolate).

This means you should:– Stay at home– Not go to work, school or public places– Not use public transport or taxis– Ask friends, family members or delivery services to do errands for you– Let your doctor or nurse specialist know if you are worried that you may run out ofmedication if self-isolating– Try to avoid visitors to your home – it’s OK for friends, family or delivery drivers to dropoff food

You may need to do this for up to 14 days to help reduce the possible spread ofinfection.

Read more coronavirus self-isolation advice HERE.

Mind have produced some excellent resources to help you look after your mentalwellbeing if you do need to self-isolate. You can access this HERE.

Do people I live with need to self-isolate too?If you are self-isolating as a precaution then the safest measure would be for your entirehousehold to self-isolate with you. Otherwise there is an inherent risk that those leaving

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the property could have contact with the virus and bring it back with them.

We understand that not all households are able to completely self-isolate, especiallythose with people are who considered “key” or “essential” workers throughout thepandemic. If this is the case, we encourage those living with you to follow this advice:

Minimise, as much as possible, the time any vulnerable family members spend inshared spaces such as kitchens, bathrooms and sitting areas, and keep sharedspaces well ventilated.Aim to keep 2 metres (3 steps) away from vulnerable people you live with andencourage them to sleep in a different bed where possible. If they can, they shoulduse a separate bathroom from the rest of the household. Make sure they useseparate towels from the other people in your house, both for drying themselvesafter bathing or showering and for hand-hygiene purposes.If you do share a toilet and bathroom with a vulnerable person, it is important thatyou clean them every time you use them (for example, wiping surfaces you havecome into contact with). Another tip is to consider drawing up a rota for bathing,with the vulnerable person using the facilities first.If you share a kitchen with a vulnerable person, avoid using it while they arepresent. If they can, they should take their meals back to their room to eat. If youhave one, use a dishwasher to clean and dry the family’s used crockery and cutlery.If this is not possible, wash them using your usual washing up liquid and warmwater and dry them thoroughly. If the vulnerable person is using their ownutensils, remember to use a separate tea towel for drying these.We understand that it will be difficult for some people to separate themselves fromothers at home. You should do your very best to follow this guidance and everyonein your household should regularly wash their hands, avoid touching their face,and clean frequently touched surfaces.

What precautions can I take to reduce my risk of contracting the virus?There are some things that you cando to reduce your risk of catchingviruses:

– Wash your hands with soap andwater for 20 seconds. Use handsanitiser gel (with at least 60 percentalcohol) if soap and water are notavailable. It is especially important to

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wash your hands more often.

1) when you get to work or arrive home 2) after you blow your nose, cough or sneeze 3) before you eat or handle food

– Try to avoid close contact with people who are unwell– Do not touch your eyes, nose or mouth if your hands are not clean

Should I wear a face mask?The British Lung Foundation says: “We do not recommend using a face mask to protectyourself as there isn’t enough evidence to show how effective they are. Also, for peopleliving with a lung condition wearing a face mask can make breathing more difficult.”

I have a holiday booked, should I still go?UK officials have announced that people aged over-70 or with significant healthconditions (including lupus) should self-isolate for a period of 12 weeks. If you have aholiday booked during this time, it would be recommended not to travel.

If you are planning on travelling overseas, it is important to be aware that somecountries are currently a higher risk for the virus than others. You can get the most up-to-date advice for overseas travel HERE.

It is important to bear in mind that the situation is changing rapidly and you could besubject to delays in your return journey. For this reason it is essential that you takeadditional supplies of your medication away with you. Further advice about takingmedication on holiday can be found in our article HERE.

What do I do if I suspect I have symptoms of coronavirus?NHS 111 has an online coronavirus service that can tell you if you need medical help andadvise you what to do.

Use this service if:– You think you might have coronavirus– You’ve recently been to a country or area with a high risk of coronavirus– You’ve been in close contact with someone with coronavirus

USE THE 111 ONLINE CORONAVIRUS SERVICE

Getting help in Scotland, Wales or Northern Ireland– Scotland: call your GP surgery or call 111 if your surgery is not open– Wales: call 111 (if available in your area) or call 0845 46 47– Northern Ireland: call 0300 200 7885

DO NOT go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak tosomeone.

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Also DO NOT make any changes to your prescribed lupus medications unlessdirected to do so by your lupus consultant.

If you have a new continuous cough OR a high temperature (37.8 degrees or higher), youshould stay at home and self-isolate (see below) for at least 7 days from when yoursymptoms started.

If you or someone you live with presents with symptoms of the virus the entirehousehold should self-isolate for at least 14 days.

If you are confirmed to have contracted coronavirus (COVID-19), you may be advised byyour consultant to temporarily stop immunosuppressive medications until the infectionhas cleared. This should only be done in consultation with your rheumatology team.

There have been a few reports about non-steroidalanti-inflammatory drugs (NSAIDs) like Ibuprofen,Diclofenac and Naproxen in people who contractcoronavirus (COVID-19) suggesting they couldincrease the risk of complications from the virus.However, this is currently being debated within themedical community and the advice is not clear.You should speak with your doctor or nursespecialist before discontinuing this medication ifalready taking it. It is suggested that you shouldnot start taking this medication at this time if youare not on it already. It is very important that you DO NOT stop your steroid dosesuddenly. A reduction in oral steroids should always be under your doctor’s supervision.

Treatment for coronavirusThere is currently no specific treatment for coronavirus.

Antibiotics do not help, as they do not work against viruses. However, in some casespeople can catch a bacterial chest infection along with the virus. If this is the case yourdoctor will recommend whether you need antibiotics for this.

Treatment aims to relieve the symptoms while your body fights the illness.

You’ll need to stay in isolation away from other people until you’ve recovered and are nolonger a risk of infection.

Is there a vaccine for coronavirus?

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At present, because this virus is so new and differentit does not have a vaccine and needs its own to bedeveloped. Researchers are trying to develop avaccine and the World Health Organisation issupporting their efforts.

Vaccines against pneumonia do not provideprotection against the coronavirus but they are stillhighly recommended to protect your health fromother respiratory illnesses.

I need to talk to someoneLUPUS UK has services available for you to speak to someone else for support and non-medical advice;

Telephone ContactsWe have trained volunteers, called Contacts, who either have lupus themselves or have afamily member with the disease. You can chat with our Contacts over the telephone.They are not medically trained but are there to offer both emotional and general supportand signpost you to someone who can advise you. The telephone service is confidential,and you can disclose as much as you wish. The support service is free apart from thecost of the call.

To request details of your local contact CLICK HERE

HealthUnlocked Online ForumThe community is available for free to anybody affected by lupus to get information,support and advice from other people who are similarly affected. We welcome peoplewith any form of lupus (SLE, discoid lupus, drug-induced lupus, cutaneous lupus etc.) aswell as those with associated conditions such as mixed connective tissue disease (MCTD)and undifferentiated connective tissue disease (UCTD).The community discusses a wide range of topics including; diagnosis, symptoms, medicalappointments, medications and support available.To join the forum CLICK HERE

Crisis SupportIf you are in crisis, please call us on 01708 731251 or contact us by email atheadoffice@lupusuk.org.uk.Please note; if you have an urgent medical crisis you should contact 999 or 111 asappropriate.

Further ReadingIf you have more questions about the coronavirus, try reading:NHS: answers to common questions about coronavirus

ACAS: Coronavirus – advice for employers and employees

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BBC: Coronavirus – advice for people with health conditions

BSR: British Society for Rheumatology – COVID-19 coronavirus update for members

Money Saving Expert: Coronavirus Financial Help & Rights

We are extremely grateful to Dr Chris Wincup (Senior Clinical Research Fellow atUniversity College London) for his assistance in the production of this article.

This article will be updated as new information and guidance becomes available.

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