Lupus Patient's Guide to Managing Disease
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Dr. Donald Thomas at lupusencyclopedia@gmail.com , author of The Lupus Encyclopedia presents a talk for the Maryland Lupus Summit 2013 giving tips about how to fight against lupus. His book answers "What is lupus?" as well as goes into detail about the symptoms (such as rash and arthritis) of lupus and related conditions such as fibromyalgia and Sjogren's syndrome. Go to www.facebook.com/LupusEncyclopedia , click "LIKE" to get daily tips and facts about learning to live with and fight lupus
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Lupus Patient's Guide to Managing Disease
- 2. • Avoid sulfa antibiotics • Bactrim • Septra • Trimethaprim-sulfamethosaxole • Add these to your allergy list Secret 1
- 3. • Keep a personal record of: • • • • Lab results Biopsy results X-rays Doctor notes • Especially keep those that established your diagnosis of lupus Secret 2
- 4. • 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% Secret 3
- 5. How important are heart attacks and strokes in people who have SLE?
- 6. • Heart attacks and strokes = #1 cause of death in SLE How important are heart attacks and strokes in people who have SLE?
- 7. • 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?
- 8. • 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.” How important are heart attacks and strokes in people who have SLE?
- 9. • 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 4
- 10. • 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 5
- 11. • 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
- 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 Pain all over • Consider possibilities of: • Fibromyalgia • Depression • Anxiety Disorder • Take the self-tests for these disorders in the handout Secret 6
- 13. • Do you have dryness? • • • • Dry eyes Dry mouth Itchy, dry skin in Winter Dry vaginal area Secret 7
- 14. • 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 7
- 15. • Do you have heartburn, gastroesophageal reflux disease (GERD)? • Abide by anti-GERD life style changes in handout Secret 8
- 16. • Keep BP < 140/90 • < 130/80 if you have: • Protein in your urine • Had a heart attack • Had a stroke Secret 9
- 17. • Keep cholesterol normal Secret 10
- 18. Is your “good” HDL level high? Have you been told that this protects you from heart disease?
- 19. • Dr. Bevra Hahn (2006): 45% of patients with SLE had proinflammatory HDL • Increases heart attacks and strokes Proinflammatory HDL
- 20. • 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 Proinflammatory HDL
- 21. • High HDL ≠ Good cholesterol in lupus Secret 11
- 22. • 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 12
- 23. • 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 13
- 24. • 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” Secret 14
- 25. What is the 2nd most common cause of death in SLE?
- 26. •INFECTIONS What is the 2nd most common cause of death in SLE?
- 27. • 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 15
- 28. • 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 16
- 29. • Get vaccines against pneumonia if you are on immunosuppressants • Pneumovax • Prevnar PCV-13 Secret 17
- 30. • 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
- 31. • Pneumovax Schedule: • 2 vaccines 5 years apart • Then a 3rd vaccination at 65 yo
- 32. • Prevnar PCV-13 Vaccine: • Once in a life time vaccine • At least one year after your Pneumovax • OR 8 weeks before your Pneumovax
- 33. • • • • • • Anal cancer Cervical cancer Vaginal and vulvar cancer Penile cancer Throat cancer Some skin cancers Cancer due to human papilloma virus = more common in SLE
- 34. • 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 18
- 35. • 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 19
- 36. • 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 20
- 37. • If you take steroids (prednisone, methylprednisolone) ask your doctor if you should be on a medicine to prevent osteoporosis Secret 21
- 38. • If you take steroids regularly, wear a medical alert bracelet Secret 22
- 39. • 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 23
- 40. • 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 24
- 41. • All patients should be on an anti-malarial • Plaquenil (hydroxychloroquine) • Chloroquine (Aralen) • Quinacrine (Atabrine) Secret 25
- 42. • 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
- 43. Hydroxychloroquine should be put in the water supply <of people who have lupus> Michelle Petri, MD, et al; Systemic Lupus Erythematosus in A Clinician’s Pearls and Myths in Rheumatology Photo credit = hopkinsmedicine.org
- 44. Amsler grid
- 45. • 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 Secret 26 American Academy of Ophthalmology
- 49. Ultraviolet light Skin NUCLEUS cell Antinuclear antibodies Cause increased lupus activity
- 50. X 15 minutes Dose of UV light = Strength X Time
- 51. X 15 minutes Dose of UV light = Strength X Time X all day long
- 52. • 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 Secret 27
- 53. Joshua Krajcik and mom Lisa Pim: 2012 LFA National Butterfly Gala Photo credit: thewashingtonlobbyist.com
- 54. • Avoid alfalfa and mung bean sprouts • Contain L-canavanine • Increases immune system activity • Increases lupus activity Secret 28
- 55. • Eat a diet rich in: • Vegetables • Fruits • Whole grains Secret 29
- 56. • 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 30
- 57. • Don’t take Echinacea • Herb sold to reduce colds and “boost immune system” Secret 31
- 58. • 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 32
- 59. • Reduce stress • Abide by stress reduction techniques in hand out • Learn to say “no” Secret 33
- 60. • 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) Secret 34
- 61. For most women with lupus, a successful pregnancy is possible. Photo credit hopkinsmedicine.org
- 62. • 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 Secret 35
- 63. Pandora’s Box Photo credit: insanelymac.com
- 64. HOPE
- 65. • 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 Secret 35