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Lupus Secrets (The Complete List)

June 13 2015 5:00 AM ET via RheumReports RheumReports

These are some lupus secrets that were handed out in a talk by Donald Thomas, MD. Full credit goes to Dr. Thomas for this great list. I would encourage everyone to visit his site - www.lupusencyclopedia.com.

The Lupus Secrets

  1. Avoid sulfa antibiotics (Septra and Bactrim); include them in your allergy list. Sulfa antibiotics can cause lupus to flare.

  2. Keep a personal record of your labs, biopsy results, x-rays, and doctors' notes (especially those that establishedyour diagnosis of SLE). These can be invaluable if you ever have to switch doctors in the future.

  3. See a rheumatologlst or other lupus specialist regularly, commonly every 3 months even if you feel great. Kidney inflammation occurs in around 40% of SLE patients and doctors can identify it at early stages when it is easier to treat.

  4. Take 81 mg of aspirin a day if you are at increased risk for heart attacks or strokes or if you are positive for antiphospholipid antibodies (check with your doctor first).

  5. Get 8 hours of quality sleep daily (get a list of "sleep hygiene" recommendations from your doctor, or download a copy from the Internet if sleep is a problem).

  6. Tell your doctor if you feel depressed or down In the dumps, especially if you have thoughts about hurting yourself. Depression is a common cause of pain and fatigue in lupus Depressnon is underdlagnosed and undertreated in lupus.

  7. If you have problems with dryness, ask your doctor if you could have Sjogren's syndrome. Treatment is important and available.

  8. Keep blood pressure consistently < 140/90 mm/Hg or < 130/80 mm/Hg if you have had a heart attack or stroke or have chronic kidney disease.

  9. Keep cholesterol normal (check with your doctor) to decrease your risk for hearth attacks and strokes.

  10. Do not smoke cigarettes. Smoking causes lupus to be more active, keeps hydroxychloroquine from working, increases strokes and heart attacks (the most common causes of death in lupus patients), increases the risk for lung cancer (which occurs more commonly in lupus patients), and causes broken bones from osteoporosis.

  11. If unable to stop smoking on your own, visit www.smokefree.gov or call 1-800-QUIT-NOW (in the USA).

  12. Exercise regularly. Exercise has numerous benefits in lupus. If you are uncertain how to exercise safely with your medical condition, ask your doctor for a physical therapy referral to learn how.

  13. Maintain normal weight. lf you have trouble, ask your doctor for recommendations.

  14. If you get a fever, call/see your primary care doctor ASAP in order to make sure you do not have an infection.

  15. Get an influenza vaccination yearly in the fall.

  16. Get the Pneumovax and Prevnar PCV-13 pneumonia vaccines.

  17. Keep up to date on all vaccinations to prevent infections (ask your doctor).

  18. Have cancer screening tests done regularly (e.g., breast, cervical, colon, prostate, etc).

  19. Consider getting the human papilloma virus vaccine (HPV, Gardasil vaccine) series to prevent HPV-associated cancers if you are less than 26 years old. HPV infections occur more commonly in lupus and there is an increased number of HPV-associated cancers in people who have lupus.

  20. Get adequate calcium (ask your doctor how much).

  21. If you are on any stomach acid-lowering medicines, consider taking calcium citrate which may be better absorbed than other forms.

  22. Get adequate vitamin D. If you are vitamin D deficient, you may need vitamin D supplements for the rest of your life. Vitamin D is an important treatment to help control lupus disease activity.

  23. If you take steroids (such as prednisone) regularly, make sure you are taking a medicine to prevent osteoporosis if it is appropriate. Check with your doctor.

  24. If you take steroids regularly, consider wearing a medical alert bracelet.

  25. Take your medications regularly. The most common reason for lupus not responding to treatment is missing doses of medications.

  26. Take a complete medication list or a bag of all your medicines to every doctors's visit. Medication lists are commonly incorrect at doctors' offices.

  27. Take hydroxychloroquine, quinacrine, or chloroquine regularly as one of your medications if prescribed by your doctor.

  28. Make sure to see your eye doctor regularly for eye exams if you are taking hydroxychloroquine. You should get an SD-OCT and a VF 10-2 test yearly (if available). A ffERG or FAF may be substituted if the other two are not available. VF 10-2 is a much better test than other visual field tests (e.g. VF 24-2).

  29. Use an Amsler grid monthly when taking hydroxychloroquine or chloroquine. You can get one from your eye doctor, or download one from www.amslergrid.com.

  30. Use sunscreen every day (even if you don't go outside), regularly avoid UV light, use Rit Sunguard in your wash to improve UV protection of clothing, and consider using LED light bulbs (UV free) in your home.

  31. Avoid alfalfa and mung bean sprouts, which can cause lupus to get worse.

  32. Eat a well-balanced diet with plenty of fruits and vegetables.

  33. Include fish, walnuts, and flax seed, which are rich sources in omega-3 fatty acids, in your diet. These may decrease inflammation in lupus.

  34. Learn how to decrease stress in your life (stress can make lupus worse).

  35. Do not take Echinacea (a supplement promoted to treat colds) as it can worsen lupus.

  36. Consider taking DHEA to help your lupus if approved by your rheumatologist. It can help decrease lupus disease activity, improve energy, help decrease doses of steroids, and help improve bone density.

  37. Do not get pregnant until cleared by your rheumatologist.

  38. If you are anti-SSA or anti-SSB positive and get pregnant, alert your OB/GYN so you can get weekly fetal heart monitoring beginning at 16 to 18 weeks of pregnancy.

  39. If you get pregnant, see your rheumatologist more often to monitor your lupus closely.

  40. Ensure your work environment is conducive for your SLE. If you feel that you need work accommodations, learn more from the Job Accommodation Network at www and 800-526-7234 (if in the USA).

  41. Continue to educate yourself about lupus. Join your local country lupus advocacy organization. Consider reading patient education books about lupus such as "The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families" by Donald Thomas, MD.


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This report was authored by the RheumReports team.

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