Lupus Secrets for Nonmedical people patients and families to learn how to live with and fight...

The Lupus “Secrets”

Donald Thomas, MD

Secret 1

• Avoid sulfa antibiotics• Bactrim• Septra• Trimethaprim-sulfamethosaxole

• Add these to your allergy list

Secret 2

• Keep a personal record of:• Lab results• Biopsy results• X-rays• Doctor notes

• Especially keep those that established your diagnosis of lupus

Secret 3

• See a rheumatologist or other lupus expert regularly• I recommend every 3 months at least• Even if you feel well• Kidney inflammation occurs in 40-60%

How important are heart attacks and strokes in people who have SLE?

How important are heart attacks and strokes in people who have SLE?

• Heart attacks and strokes = #1 cause of death in SLE

How important are heart attacks and strokes in people who have SLE?

• African American women with SLE develop heart attacks and strokes 20 years younger than their peers

How important are heart attacks and strokes in people who have SLE?

• AHA 2011 Update: “Women with <SLE> .. without clinically relevant <coronary artery disease> should be considered at risk and screened… “

• “… women with …<coronary artery disease> … should be screened for …< SLE>… allow the autoimmune disease condition to be addressed.”

Secret 4

• Take aspirin 81 mg a day if at increased risk for heart attacks, strokes, blood clots• High blood pressure• High cholesterol• Diabetes• Strong family history for heart attacks• + Antiphospholipid antibodies

Secret 5

• Get 8 hours of good quality sleep per night• Read and do everything in the sleep hygiene techniques list• Schedule these 8 hours into every day

Secret 6

• Do you ever feel:• Down in the dumps• Have problems with memory, concentration• Have severe fatigue• Trouble sleeping• Loss of interest in enjoyable activities• Pain all over

Secret 6

• Do you ever feel:• Down in the dumps• Have problems with memory, concentration• Have severe fatigue• Trouble sleeping• Loss of interest in enjoyable activities• Pain all over

• Consider possibilities of:• Fibromyalgia• Depression• Anxiety Disorder

• Take the self-tests for these disorders in the handout

Secret 7

• Do you have dryness?• Dry eyes• Dry mouth• Itchy, dry skin in Winter• Dry vaginal area

Secret 7

• Do you have dryness?• Dry eyes• Dry mouth• Itchy, dry skin in Winter• Dry vaginal area

• 30% of patients have Sjögren's Syndrome• Especially possible if +SSA/SSB antibodies

• Go to www.sjogrens.org

Secret 8

• Do you have heartburn, gastroesophageal reflux disease (GERD)?• Abide by anti-GERD life style changes in handout

Secret 9

• Keep BP < 140/90 • < 130/80 if you have:

• Protein in your urine• Had a heart attack• Had a stroke

Secret 10

• Keep cholesterol normal

Is your “good” HDL level high?Have you been told that this protects you from heart disease?

Proinflammatory HDL

• Dr. Bevra Hahn (2006): 45% of patients with SLE had proinflammatory HDL• Increases heart attacks and strokes

Proinflammatory HDL

• Dr. Bevra Hahn (2006): 45% of patients with SLE had proinflammatory HDL• Increases heart attacks and strokes

• 2010 article: SLE patients who exercised regularly had lower amounts of proinflammatory HDL

Secret 11

• High HDL ≠ Good cholesterol in lupus

Secret 12

• Do not smoke cigarettes• Keeps Plaquenil from working• Increases lupus disease activity• Tobacco smoke contains hydrazine

• Causes heart attacks and strokes• Increases lung cancer• Causes broken bones (osteoporosis)

• Call 1-800-QUIT-NOW• www.smokefree.gov

Secret 13

• Exercise regularly• Decreases heart attacks and strokes• Decrease the bad HDL that causes inflammation• Decreases fat and excess weight• Improves sleep• Improves sense of well-being• Decreases pain levels• Decreases stress• Lowers symptoms of fibromyalgia and depression

Secret 14

• Maintain proper weight• Eat properly• Exercise regularly

• Consider getting a body composition analysis by DXA • Many lupus patients are “obese” even though their BMI is

“normal”

What is the 2nd most common cause of death in SLE?

What is the 2nd most common cause of death in SLE?

•INFECTIONS

Secret 15

• If you get a fever• Most dangerous possible cause = Infection• Call and see a doctor immediately• Primary care physician• Urgent care centers• Emergency rooms

• Don’t assume it is your lupus• Don’t assume it may be a “mild” infection that will go away

Secret 16

• Get the flu shot every Fall• Centers for Disease Control Statistics:• 20,000 – 50,000 Americans die yearly from complications of

influenza• Most are elderly, babies, and immunosuppressed

Secret 17

• Get vaccines against pneumonia if you are on immunosuppressants• Pneumovax• Prevnar PCV-13

• Immunosuppressant Medications:• Prednisone > 7 mg a day• Methotrexate• Arava (leflunomide)• Imuran (azathioprine)• CellCept (mycophenolate)• Myfortic (mycophenolate)• Cytoxan (cyclophosphamide) • Benlysta (belimumab)• Rituxan (rituximab)• Humira, Enbrel, Remicade, Orencia, Actemra

• Pneumovax Schedule:• 2 vaccines 5 years apart• Then a 3rd vaccination at 65 yo

• Prevnar PCV-13 Vaccine:• Once in a life time vaccine• At least one year after your Pneumovax• OR 8 weeks before your Pneumovax

Cancer due to human papilloma virus = more common in SLE

• Anal cancer• Cervical cancer• Vaginal and vulvar cancer• Penile cancer• Throat cancer• Some skin cancers

Secret 18

• Get the Gardasil vaccine (protection from human papilloma virus)• Everyone 9 yo – 26 yo• Most effective before sexual activity• Can prevent additional infections in those who have already

been infected

• ?Use in those >26 yo?• Sexually active• Not in a monogamous relationship

Secret 19

• Keep up on cancer screening tests• Studies show that people with lupus get less cancer

screenings• Cancer = 4th most common cause of death• Screening tests:• Colonoscopy• Mammogram• Pap smear• Yearly low dose chest CT if smoker

Secret 20

• Take a vitamin D supplement if your level is low• Goal level?• At least 30 if on steroids• Dr. Petri’s study suggests around 40

Secret 21

• If you take steroids (prednisone, methylprednisolone) ask your doctor if you should be on a medicine to prevent osteoporosis

Secret 22

• If you take steroids regularly, wear a medical alert bracelet

Secret 23

• Take medications regularly as prescribed• Large percentage of patients don’t take their Plaquenil

regularly• Noncompliance = #1 reason for lupus flares and

medicines “not working”

Secret 24

• Carry an up to date medication list at all times• Show it to anyone who asks you what medicines you are

taking• Up date it every time a change is made• Discard old medicines

Secret 25

• All patients should be on an anti-malarial• Plaquenil (hydroxychloroquine)• Chloroquine (Aralen)• Quinacrine (Atabrine)

• Benefits of Antimalarial Medicines:• Increase life span• Decrease internal organ involvement• Decrease risk of worsening of lupus• Decreases doses needed of steroids• Better control of severe disease when used with stronger

medicines• Decreases blood clots• Decreases neonatal lupus births• Improves chances of a successful pregnancy• Decrease the risk of diabetes

Hydroxychloroquine should be put in the water supply <of people who have lupus>

Michelle Petri, MD, et al; Systemic Lupus Erythematosus inA Clinician’s Pearls and Myths in RheumatologyPhoto credit = hopkinsmedicine.org

Amsler grid

Secret 26

• Prevent eye side effects from Plaquenil• Recommended dosing for women• 5 ½” – 5’ 6 ½” = 300 mg a day• Less than 5 ½” = 200 mg a day• Weight 102 - 135# = 300 mg a day• < 102# = 200 mg a day

• Use an Amsler grid monthly• See eye doctor yearly after 5 years on Plaquenil• Ask eye doctor to do:• Visual Field 10-2 yearly• SD-OCT or FAF or mfERG yearly

American Academy of Ophthalmology

Ultraviolet light

Ultraviolet light

Skin

cellNUCLEUS

Ultraviolet light

Skin

cellNUCLEUScell

NUCLEUS

damage

Ultraviolet light

Skin

cellNUCLEUS

Antinuclear antibodiesCause increased lupus activity

Dose of UV light = Strength X Time

X 15 minutes

Dose of UV light = Strength X Time

X 15 minutes

X all day long

Secret 27

• Use sunscreen• Every day• Even if don’t go outside• On all exposed skin areas• Use several times a day if you go outside• Abide by UV protection measures in hand out

Joshua Krajcik and mom Lisa Pim: 2012 LFA National Butterfly GalaPhoto credit: thewashingtonlobbyist.com

Secret 28

• Avoid alfalfa and mung bean sprouts• Contain L-canavanine• Increases immune system activity• Increases lupus activity

Secret 29

• Eat a diet rich in:• Vegetables• Fruits• Whole grains

Secret 30

• Eat a diet rich in omega-3 fatty acids:• Cold water fish• Walnuts• Flax seed

• Omega-3 fatty acids:• Decrease inflammation• Decrease cardiovascular disease• Improves dry eyes from Sjögren's syndrome• Use diet… NOT pills

• Use more olive oil and canola oil in cooking• Reduces amounts of bad omega-6 fatty acids

Secret 31

• Don’t take Echinacea• Herb sold to reduce colds and “boost immune system”

Secret 32

• Consider taking DHEA• 200 mg a day• May help lupus by:• Improving bone density• Improving energy• Decreasing steroid doses• Help with minor lupus problems

• Potential side effects: Acne, hair growth• Only get from a compounding pharmacist• Village Green Apothecary, Bethesda

• Only do after discussion with rheumatologist

Secret 33

• Reduce stress• Abide by stress reduction techniques in hand out• Learn to say “no”

Secret 34

• Pregnancy Secrets• Don’t become pregnant unless cleared by rheumatologist• If SSA, SSB positive- get fetal heart monitoring regularly• See your rheumatologist and high risk OB regularly• Take aspirin 81mg a day if + antiphospholipid antibodies

(ask rheumatologist)

For most women with lupus, a successful pregnancy is possible.

• Michelle Petri, MD: Medical Director Lupus Center, Johns Hopkins

Photo credit hopkinsmedicine.org

Secret 35

• Learn as much as you can about lupus• Join the Lupus Foundation of America• www.lupusdmv.org

• Join Lupus Science & Medicine• Free internet lupus medical journal• journals.bmj.com/site/lupus• Click on “email alerts”

• “Like” me at facebook.com/LupusEncyclopedia• Regular tips and Research up dates

• Follow me on Twitter @lupuscyclopedia

Pandora’s Box

Photo credit: insanelymac.com

HOPE

Secret 35

• Learn as much as you can about lupus• Join the Lupus Foundation of America• www.lupusdmv.org

• Join Lupus Science & Medicine• Free internet lupus medical journal• journals.bmj.com/site/lupus• Click on “email alerts”

• “Like” me at facebook.com/LupusEncyclopedia• Regular tips and Research up dates

• Follow me on Twitter @lupuscyclopedia