Living Well with Lupus

Dr. Shauna O’Sullivan, DO, FACPAssistant Professor of Medicine, USUHS

March 28, 2015

www.myquincy.net

Disclaimer

• Nothing to disclose

• The views and opinions expressed herein do not

necessarily state or reflect those of the Naval

Medical Center Portsmouth, DoD, or the United

States Government.

Contributors

• Dr. Donald Thomas

– Lupus Encyclopedia

– Lupus Secrets

• Molly Fund

What is Systemic Lupus Erythematous?

• Autoimmune disease

– Production of autoantibodies that deposit in tissues and fix

complement systemic inflammation

• Women of childbearing age (16-45); More common in

African Americans, Asians and Hispanics

• Heterogeneous disease with a continuum of disease activity

– Mild, moderate or severe disease (different shades of SLE)

Secret # 1 - Keep a Personal Record of Health Care

• Keep a personal record of:

– Doctors notes

– Important labs, biopsy results or X-rays

– Know how your diagnosis was made and how you

presented with your disease (manifestations)

• Don’t rely on good communication about your health

care amongst your physicians

Secret # 2 – Take Aspirin 81 mg daily

• If increased risk for heart attacks, strokes or blood

clots

• Heart attacks and strokes are #1 cause of death

– Presents at younger ages African American Females

(AAF) present 20 yrs. younger than peers

AHA 2011 Update

Systemic lupus erythematosus and rheumatoid arthritis may be unrecognized risk factors in women and have been associated with a significantly increased relative risk for CVD. Women with such conditions but without clinically evident CVD should be considered at risk and screened for CVD risk factors

Whereas women with prior CVD events should be screened for these conditions to allow appropriate secondary CVD prevention efforts and to allow the autoimmune condition to be addressed.

Mosca L, et al. Circulation 2011; 123(11): 1243–1262.

Secret #3 – Keep BP < 140/90

• BP is a big contributor to cardiovascular disease

• Goal is < 140/90 but < 130/80 if :

– Protein in urine, prior hx of heart attacks and strokes

• Must engage primary care physician in the

management !

Secret #4 – High HDL ≠ Good Cholesterol in Lupus

www.newhealthcorp.com

Pro-inflammatory HDL

• Dr. Bevra Hahn in 2006:

– 45% of SLE patients with pro-inflammatory HDL (piHDL) ↑ heart

attacks and strokes

• Most of time HDL should ↓ inflammation and reduce risk of

heart attacks and strokes

• Test is not clinically available on standard lipid panel

• What to do? (2010) Need to exercise regularly

– Lowers pro-inflammatory HDL and less blocked arteries found

Secret # 5 – Exercise Regularly

www.earnestholistichealth.com

Exercise Benefits

• Decreases :

– Heart attacks and strokes

– Pro-inflammatory HDL that causes inflammation

– Fat and excess weight

– Pain levels and stress

– Improves sleep and sense of well being and symptoms of fibromyalgia

and depression

• Exercise (especially dance) improves memory (aka lupus fog) and

reduces onset of dementia

Taking your health seriously should be the most important thing you do for yourself and that

includes exercising!

Secret # 6 – Do Not Smoke Cigarettes

• Increases lupus disease activity; trigger for SLE?

– Tobacco smoke contains hydrazine lupus more active

• Keeps Plaquenil from working

• Causes heart attacks and strokes

• Increases lung cancer risk

• Increases risk of osteoporosis

Call 1-800-QUIT-NOWwww.smokefree.gov

www.smokershelplineworks.ca

Secret # 7 – If you get a Fever

• Most dangerous cause of fever = infections

– 2nd most common cause of death

• DON’T ASSUME IT IS YOUR LUPUS or assume it

may be a “mild” infection that will go away

• Call PCP immediately, ER/urgent care to evaluate

for infection

Secret # 8 – Get the Flu vaccine

• CDC: 20,000 to 50, 000 Americans die yearly from

complications of influenza

• Most are elderly, babies/children and

immunosuppressed

• Most did not get the vaccine

• It does not cause the Flu lupus patients should only

get the shot and not the nasal mist

Secret # 9 – Get Vaccines Against Pneumonia if on Immunosuppressant's

• Should get both vaccines

• Pneumovax: 2 vaccines 5 years apart, then another

one at age 65

• Prevnar (PCV -13)*: once in a lifetime

– Obtain at least one year after your pneumovax or 8

weeks before your pneumovax

Immunosuppressant's

• Prednisone > 7 mg

• Methotrexate

• Arava (Leflunomide)

• Imuran (Azathioprine)

• Cellcept (Mycophenolate)

• Cytoxan

(cyclophosphamide)

• Benlysta (belimumab)

• Rituxan (rituximab)

• TNFi (Humira, Enbrel,

Remicade)

• Orencia

• Actemra (tocilizumab)

• Xeljanz (tofacitinib)

Secret # 10 – Get Gardasil Vaccine (protects from human papilloma virus)

• Everyone 9 -26 yrs. (males and females)

– Most effective before sexual activity and can prevent additional

infections in those who have already been infected

• Sexually transmitted disease

– 80% of population have been infected during lifetime

• SLE higher rates of HPV then controls

• HPV causes: anal, cervical, vaginal and vulvar, penile, throat and

non-melanoma skin cancers

Secret # 11 – Keep up on Cancer Screenings

• Studies show lupus patients get fewer cancer

screenings

• Cancer is 4th most common cause of death

• Must get routine colonoscopy, mammogram, pap

smears

• Yearly low dose chest CT if smoker

Secret # 12 – Do you Ever Feel …

• Ever feel:

– Down in the dumps or loss of interest

– Problems with memory or concentration

– Severe fatigue or trouble sleeping

– Pain all over

• If so, you may be suffering from depression,

fibromyalgia or anxiety disorder and not SLE

Secret # 13 – Do you have Dryness?

Dryness Presentation

• Dry eyes, mouth and vaginal areas

– Can lead to medical issues that can be treated

• Itchy, dry skin worse in winter

• 30%-50% of patients have overlap with Sjögren’s

syndrome

– Especially with + Ro/SSA and La/SSB ab

• Go to www.sjogrens.org

Secret # 14 – Take a Vitamin D Supplement If Level Low

• Should be taken regularly and for rest of life

– Most should be taking at least vitamin D3 5000 IU/day

• Associated with more severe SLE and a predictor of

lupus flares (like complements and DS DNA)

• Get your vitamin D level checked every 3 months until

goal

– Goal is 40 or higher based on JHU study

Secret # 15 – If on Steroids are you also on an Osteoporosis Medication?

• SLE patients have higher risk of osteoporosis

• This risk dramatically increases while on steroids

• Most patients who are on long term steroid > 3

months should be on an osteoporosis medication

– Caution in childbearing women

Secret # 16 - If you take steroids regularly, obtain a medical alert bracelet

• If on steroids for a long time you are at risk for adrenal

insufficiency

• Adrenal gland normally makes 5-7 mg of steroids

(prednisone) per day and under stress as high as 20 mg

• If taking oral prednisone, the adrenal gland stops producing

steroids

– Under periods of stress if not further supplemented can lead to

worsening SLE and adrenal insufficiency to include death

Please follow your doctor’s instructions when it comes to steroids!

Do not start, stop prednisone on your own. Let us manage the medication to keep you safe and prevent significant side

effects to include adrenal insufficiency!

www.funkygenes.blogspot.com

Secret # 17 – Carry an up to date Medication List

• Take ownership of your healthcare

– Know what medications and doses that you take

daily

• Make a list on computer and bring the list to

all appointments update your list with every

change

Secret # 18 – Take Medications Regularly as Prescribed

• Studies show ½ of lupus patients do not take

plaquenil regularly

– Plaquenil is your multivitamin for SLE

• Non-compliance with medications = #1

reason for SLE flares and medications “not

working”

Secret # 19 – All Patients Should be on an Anti-Malarial

It is our multivitamin for SLE !!!

www.amazon.com

• Plaquenil (Hydroxychloroquine)

• Chloroquine (Aralen)

• Quinacrine

Reduction in SLE flares 1. Canadian Hydroxychloroquine Study Group. N Engl J Med. 1991: 324: 150-4.

Reduction in SLE organ damage

1. Fessler BJ, et al. Arthritis Rheum. 2005; 52 (5): 1473-1480.

2. Siso A, et al. Lupus 2008; 17: 28-288.

Later onset of SLE 1. James JA, et al. Lupus 2007; 16: 401-409.

Improvement in SLE survival

1. Alarcon GS, et al. Arthritis Rheum 2005; 52: S726

2. Ruiz-Irastorza G, et al. Lupus 2006; 15: 577-583.

3. Shinjo S, et al. Arthritis Rheum 2010; 62(3): 855-862.

Improvement in SLE flares during pregnancy, successful pregnancy

1. Levy RA, et al. Lupus 2001; 10: 401-404. 2. Clowse ME, et al. Arthritis Rheum 2006;

54:3640-3647.

Adapted from M Petri lecture on SLE 2010.

Benefits of Plaquenil

Improves blood sugars

1. Wasko MC, et al. JAMA 2007; 298: 187-193. 2. Kaprove Penn S, et al. J Rheumatol 2010; 37:1136-

42. 3. Bili A, et al. J Clin Rheumatol 2011;17: 115-20.

Reduction in lipids 1. Petri M. Lupus. 1996; 5(Supp. 1): S 16-S22. 2. Morris S, et al. Arthritis Care and Research 2011;

530-534.

Reduction in thrombosis

1. Pierangeli Ss, Harris EN. Lupus. 1999; 5: 451-52. Rand J, et al. Blood 2010; 115:2292-2299. 3. Broder A, et al. J Rheumatol 2013; 40:30-3.

Favorable effect on bone mineral density

1. Ruiz-Irastorza G, et al. Ann Rheum Dis 2010; 69: 20-28.

Adapted from M Petri lecture on SLE 2010.

Benefits of Plaquenil

Secret # 20 – Preventing Eye Side Effects from Plaquenil

• Higher doses for prolonged periods of times retinal

toxicity leading to blindness

• Weight (IBW) based dosing (6.5 mg/kg/day)

• Use Amsler grid monthly to check vision

• Get baseline exam then see yearly after 5 years

– Visual Field 10-2 yearly

– SD-OCT or FAF or mfERG yearly

Dosing of Plaquenil (women):

≥ 5’7” = 400 mg po daily5 ½” – 5’6 ½” = 300 mg dailyLess than 5 ½ = 200 mg daily

If weight < 135 and not overweight = 300 mg daily

If < 100 = 200 mg daily

www.webmd.com

Secret # 21 – Use Sunscreen

• Sun specifically UV light can worsen SLE

– Only about 30% get a rash

– Dose of UV light = strength x time

• Must use sunscreen every day even when indoors and place

on all sun exposed areas (SPF 70 or greater with helioplex)

– Reapply several times a day if go outside

• LED lights are the best for SLE patients (more expensive but

last 20-30yrs)

www.medscape.com

Secret # 22 – Avoid Sulfa Antibiotics

• Sulfa antibiotics have been associated with flares of

SLE

– Trimethoprim-sulfamethoxazole (Bactrim, Septra)

– Commonly prescribed antibiotics (UTI’s)

• Consider placing as an allergy *

Secret # 23 – Eat a Diet Rich in Omega 3 Fatty Acids

• Cold water fatty fish (salmon, sardines, mackerel),

Walnuts and Flax seed

• Decreases inflammation SLE activity and cardiovascular

disease

– Improves dry eyes from Sjogren’s syndrome

• Get through your diet. Not through pills !!!

– Use olive oil and canola oil reduces bad omega 6 fatty acids

www.lowedmond.blogspot.com

Secret # 24 – Avoid Alfalfa and Mung Bean Sprouts

• Contain an amino acid L-Canavanine

– Increases immune system and lupus activity

www.greengardenorganics.net

Secret #25 - Don’t take the herb Echinacea

• Sold to reduce colds and “boost the immune

system”

• Causes lupus to flare

www.walmart.com

Secret # 26 – Consider Taking DHEA

• Take 200 mg po daily

• May help improve:

– Bone density, improve energy, decrease steroid doses , help with

arthritis (minor SLE issues)

– Potential SE: Acne and hair growth

• Can get from compounding pharmacy do not buy the

supplements

– Prastera: new oral prescription medication (not FDA approved)

Secret # 27 – Reduce Stress

• Learn to say no

• Get plenty of sleep and exercise

• Live within your means

• Meditate, pray

• Surround yourself with good support

Secret # 28 – Wait until Your Disease is Clinically Quiescent before Getting Pregnant

• 2-3 fold increase in SLE activity during pregnancy

– Cutaneous disease, arthritis and hematologic disease

• Risk factors for increased SLE activity:

– Active lupus within the 6 months prior to conception (7.25 fold)

– Multiple flares in the years prior to conception

– Discontinuation of Plaquenil

• Delay conception until disease quiescent for at least 6 months

• Call OTIS for medication information (877-311-8972)

Secret # 29 – Learn as Much as You Can About Your Disease

• Join your local chapter of the Lupus Foundation of

America (www.lupus.org)

• Joint the new LFA and BMJ journal online

– Journals.bmj.com/site/lupus

• Join Molly’s Fund (www.mollysfund.org)

Questions ???

www.pinterest.com

References • Thomas D. The Lupus Encyclopedia: A comprehensive guide for patients and

families. 2014. • West S. Rheumatology Secrets. 2015. • Marmor M, et al. Revised Recommendations on screening for Chloroquine and

Hydroxychloroquine Retinopathy. American Journal of Ophthalmology 2011; 118:415-422.

• Petri M, et al. Vitamin D in Systemic Lupus Erythematous. Arthritis and Rehuamtism 2013; 65(7): 1865-1871.

• Petri, M. Systemic Lupus Erythematous 2006 update. Rheumatology grand Rounds.

• Petri M, et al. Antibiotic allergy in systemic lupus erythematous: a case control study. Journal of Rheumatology 1992; 19(2): 265-269.

• Bengtsson A, et al. Risk factors for developing systemic lupus erythematous: a case controlled study in Southern Sweeden. Rheumatology 2002; 41: 563-571.

• Sawalha A, et al . Dehydroepiandrosterone in systemic lupus erythematous. Current Rheumatology Reports 2008; 10 (4): 286-291.

References • Vasco S. Drug induced lupus: an update. Lupus 2006; 15: 757-761. • McMahon M, et al. Proinflammatory high density lipoprotein as a biomarker

for athersclerosis in patients with systemic lupus erythematous and rheumatoid arthritis. Arthritis and Rheumatism 2006; 54(8): 2541-2549.

• McMahon M, et al. Dysfunctional pro-inflammatory high density lipoproteins confer increased risk for athersclerosis in women with systemic lupus erythematous. Arthritis and Rheuamtism 2009; 60(8): 2428-2437.

• Volkmann E, et al. Low physical activity is associated with proinflammatory high density lipoprotein and increased subclinical atherosclerosis in women with systemic lupus erythemaotus. Arthritis Care Res 2010; 62 (2): 258-265.

• Mosca L, et al. Effectiveness-based guidelines for the prevention of cardiovascular disease in women -2011 update. Circulation 2011; 123: 1-38.