The Lupus Secrets Secret 1: Avoid sulfa antibiotics (add to your allergy list) Trimethaprim-sulfamethosaxole (Bactrim, Septra) Secret 2: High HDL ≠ Good cholesterol in lupus We are unable to measure pro-inflammatory HDL yet outside of research Pro-inflammatory HDL occurs in 45% of people who have systemic lupus Regular exercise is the best way to decrease this bad type of HDL and to decrease its causing hardening of the arteries that can lead to heart attacks and strokes. Secret 3: All patients should be on an anti-malarial Plaquenil (hydroxychloroquine), Chloroquine (Aralen), Quinacrine Download from the internet “Treat-to-target in systemic lupus erythematosus: recommendations from an international task force” by Ronald van Vollenhoven et al. in the Annals of the Rheumatic Diseases to read all current lupus treatment recommendations Benefits of Antimalarial Medicines: Increase life span, Decrease internal organ involvement, Decrease risk of worsening of lupus, Decreases heart attacks and strokes from 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, Decreases risk of getting diabetes Secret 4: Preventing eye side effects from Plaquenil (American Academy of Ophthalmology) Use an Amsler grid monthly (a sample is in the appendix) See eye doctor yearly after 5 years on Plaquenil (yearly right away if you have any retina problems or are at increased risk for retina eye problems, eg if you have diabetes) Ask eye doctor to do 2 tests yearly: Visual Field 10-2 yearly and either … SD-OCT or FAF or mfERG yearly Secret 5: 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 strict UV protection measures (list at end of the Secrets) Secret 6: Take a vitamin D supplement if your level is low Goal level: Johns Hopkins study suggests you should be on a vitamin D supplement if your level is less than 40 ng/mL. Your goal level should be around 40 or higher (know your number! If less than 40, tell your doctor you’d like to take a vitamin D supplement). After starting on a vitamin D supplement, have it rechecked after 3 months, if it is not around 40, then increase your dose. Repeat this step and adjust dose every 3 months until the target of “around 40” or higher is achieved. Source: Vitamin D in Systemic Lupus Erythematosus: Modest Association With Disease Activity and the Urine Protein-to-Creatinine Ratio by Michelle Petri, et al. Arthritis and Rheumatology. July 2013;65(7):1865-1871. Secret 7: Eat a diet healthy for lupus Avoid alfalfa and mung bean sprouts: Contain L-canavanine (Increases immune system and lupus activity) Eat a diet rich in Omega-3 fatty acids: Cold water fatty fish (salmon, sardines, tuna, mackerel), Walnuts, Flax seed (Decreases inflammation, Decreases cardiovascular disease, Improves dry eyes from Sjögren's syndrome) Use diet… NOT pills; studies using omega-3 supplements, fish oil capsules, etc show no health benefits Use more olive oil (Reduces bad omega-6 fatty acids); a study using 1 tablespoon per day showed benefits in lupus Consider eating “The Mediterranean Diet” Add turmeric (curcumin) to food daily or take a supplement daily (decreases inflammation; lupus mouse and human lupus studies show it decreases lupus disease activity) Secret 8: Don’t take the herb Echinacea Sold to reduce colds and “boost immune system”: causes lupus to flare Avoid supplements touted as “boosting” or “supporting” the immune system Secret 9: Learn as much as you can about lupus Join The Lupus Foundation of America at www.lupus.org or call 202-349-1155 or email firstname.lastname@example.org Join the British Medical Journal’s online lupus journal journals.bmj.com/site/lupus Click on “email alerts” This is a FREE online lupus research journal that you have access to “Like” Dr. Thomas’ lupus educational posts at www.facebook.com/LupusEncyclopedia for regular lupus tips, facts and research updates Get his highly acclaimed patient education book, “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families” at amazon.com Follow him also on Twitter @lupuscyclopedia Secret 10: Keep a personal record of: Lab results, Biopsy results, X-rays, Doctor notes (easiest to collect these little by little after every doctor visit) Especially keep those that established your diagnosis of lupus Carry around up dated medicine list + allergy list at ALL times Secret 11: Take aspirin 81 mg a day (ask your doctor if this is OK first) A 2017 study showed that Plaquenil + 81 mg aspirin daily extended the life span of lupus patients significantly and decreased heart attacks and strokes. First ask your doctor if it is safe for you to do this. Secret 12: Do you ever feel: Down in the dumps, Have problems with memory, concentration, Have severe fatigue, Trouble sleeping, Loss of interest in enjoyable activities, Ache all over Consider possibilities of: Fibromyalgia, Depression, Anxiety Disorder (use self tests in the appendix and discuss with your doctors; depression especially is underdiagnosed and undertreated in lupus) Secret 13: 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 and discuss the dryness problems with your rheumatologist Secret 14: Keep BP < 120/80 NOTE: This is the newest recommendation from the American College of Cardiology If you are elderly or get too dizzy at these numbers, your doctor may elect to keep your blood pressure a little higher 120/80 is now considered to be “high blood pressure” and NOT normal Secret 15: Do not smoke cigarettes Keeps Plaquenil from working, Increases lupus disease activity (Tobacco smoke contains hydrazine that makes lupus more active), Causes heart attacks and strokes, Increases lung cancer, Causes broken bones (osteoporosis), and causes you to look a lot older than your age Call 1-800-QUIT-NOW www.smokefree.gov Secret 16: 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 and stress, Lowers symptoms of fibromyalgia and depression Dance classes especially felt to be good for memory problems Secret 17: If you get a fever Most dangerous possible cause = Infection Call and see a doctor immediately (Primary care physician, Urgent care centers, or Emergency room) Don’t assume it is your lupus or assume it may be a “mild” infection that will go away Secret 18: Get the flu shot every Fall CDC: 20,000 – 50,000 Americans die yearly from complications of influenza Most are elderly, babies, and immunosuppressed (eg have lupus) Secret 19: Get vaccines against pneumonia and shingles Pneumovax (2 vaccines 5 years apart, then another one at age 65 yo) Prevnar PCV-13 (once in a life time) Zostavax (shingles) … but contains live virus, ask your rheumatologist 1st (should not get if on CellCept, Benlysta, Rituxan; DO GET if on methotrexate, Imuran, Plaquenil) Shingrix is MUCH more effective than Zostavax and does not contain live virus. Do not get until we figure out if it is safe for lupus patients or not. Secret 20: Get the Gardasil vaccine (protection from human papilloma virus related cancer; consider it as cancer prevention therapy) Everyone 9 yo – 26 yo (Most effective before sexual activity and Can prevent additional infections in those who have already been infected) Use in those >26 yo? (Sexually active and Not in a monogamous relationship) HPV cancers are more common in lupus: Anal, Cervical, Vaginal and vulvar, Penile, Throat, and Nonmelanoma skin cancers Secret 21: 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 22: If you take steroids (prednisone, methylprednisolone) ask your doctor if you should be on a medicine to prevent osteoporosis Secret 23: If you take steroids regularly, wear a medical alert bracelet Secret 24: 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 25: Carry an up-to-date medication list at all times Show it to anyone who asks you what medicines you are taking; Update it every time a change is made; Discard old medicines Secret 26: Consider taking DHEA 200 mg a day if approved by your rheumatologist (ask your doc before taking this) May help lupus by Improving bone density, Decreasing steroid doses, Help with minor lupus problems Potential side effects: Acne, hair growth Only get from a compounding pharmacist (e.g. Village Green Apothecary, Bethesda) Secret 27: Reduce stress Learn to say “no”, Get plenty of sleep, Exercise, Live within your means, Meditate, pray, Work on arriving early for meetings, Run errands during off hours Don’t have high expectations of others Secret 27: Maintain good dental health Brush twice daily, floss daily, immediately have gingivitis and periodontal disease treated Studies show that bad bacteria of gingivitis/periodontal disease can flare lupus A study showed that having periodontal disease treated along with usual lupus care resulted in better lupus disease control
The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.