Robin Dibner, M.D.
Lenox Hill Hospital
S.L.E. Lupus Foundation
New York City Hospital Tour
October 13, 2010
Today is the best time in
the history of the world to
have lupus….and
tomorrow will be even
better…
Control what you can,
manage what you can’t,
and do NOT blame
yourself….
Avoiding Triggers
 Avoid infection:
 Annual flu shot
 Pneumococcal vaccine
 Consider “shingles shot” if you are not on...
Avoiding Triggers
 The sun is not your friend!
 Photosensitivity is common and can trigger flares
 Hydroxychloroquine i...
Avoiding Triggers
 Miscellaneous triggers are individualized:
 Sulfa drugs – avoid if there are other alternatives
 Oth...
Sleep
 Fatigue is one of the most common symptoms
in lupus – worse with disease activity
 Sleep deprivation lowers resis...
Smoking
DON’T – get help
 Smoking raises the risk for:
 Blood clots
 Coronary artery disease and stroke
 Osteoporosis...
Alcohol
 Alcohol has specific problematic effects
 Empty calories
 Increased ulcer risk with NSAIDs
 Increased triglyc...
Drugs and Supplements
 Illicit drugs and prescription drugs don’t mix
 Unproven vitamin and dietary supplements may
also...
Nutrition and Weight Control
 General advice
 Heart-healthy diet: low fat, Mediterranean type
diet
 Limit meats, use no...
Nutrition and Weight
Control
 When on steroids:
 5mg per day is the threshold for weight gain
 starts within 2 months
...
Nutrition and Weight
Control
 Hunger is extreme! The only way to avoid weight
gain is vigorous healthy diet with calorie ...
Exercise
Hard to do when you are in pain and exhausted
BUT SO IMPORTANT BECAUSE:
 Maintains cardiovascular fitness (brisk...
Controlling Stress
 Easier said than done
 Exercise
 Yoga
 Meditation and relaxation techniques
 Counseling
 Peer su...
It’s not only about lupus…
 Take meticulous care of your general health and
preventive health
 Immunizations including H...
Look your best….
 Hair
 Skin
 Clothes that fit
 Pamper yourself!
 Secret weapon....carry a picture from before you
we...
Partner with your Health
Team
 Primary internist
 Rheumatologist
 Dermatologist
 Ophthalmologist
 Nephrologist
 Obst...
Partner with your Home
Team
 Family
 Partner or spouse
 Friends
 Neighbors
 Work Colleagues
 Lupus support group
 T...
Stay Informed
 Know your body
 Know medication side effects
 Know signs of a flare
 News flashes often lead to disappo...
Control what you can,
manage what you can’t,
and do NOT blame
yourself….
You are so much more
than lupus……
…lead your life to the
fullest!
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Managing Lupus and Maintaining a Healthy Lifestyle

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Managing Lupus and Maintaining a Healthy Lifestyle

  1. 1. Robin Dibner, M.D. Lenox Hill Hospital S.L.E. Lupus Foundation New York City Hospital Tour October 13, 2010
  2. 2. Today is the best time in the history of the world to have lupus….and tomorrow will be even better…
  3. 3. Control what you can, manage what you can’t, and do NOT blame yourself….
  4. 4. Avoiding Triggers  Avoid infection:  Annual flu shot  Pneumococcal vaccine  Consider “shingles shot” if you are not on immunosuppressants  Hand sanitizers and hand washing  Sensible avoidance of sick contacts  Avoid undercooked meat, poultry, eggs, and fish  Travel with a thermometer
  5. 5. Avoiding Triggers  The sun is not your friend!  Photosensitivity is common and can trigger flares  Hydroxychloroquine is a photosensitizer  Avoid peak sun hours (10 -2), seek shade  Protective clothing  Hats  UVA and B sunblock, SPF 30 is minimum – USE IT!  UVA and B protective sunglasses
  6. 6. Avoiding Triggers  Miscellaneous triggers are individualized:  Sulfa drugs – avoid if there are other alternatives  Other drugs (?)  Hormones – The Pill and hormone IUDs, implants  Pregnancy – if lupus has been poorly controlled  Stress  Alfalfa sprouts – the only known food trigger
  7. 7. Sleep  Fatigue is one of the most common symptoms in lupus – worse with disease activity  Sleep deprivation lowers resistance to infection  Sleep and rest have anti-inflammatory effects  Important to plan well to get enough sleep  Try for extra rest periods during flares  Know your limits
  8. 8. Smoking DON’T – get help  Smoking raises the risk for:  Blood clots  Coronary artery disease and stroke  Osteoporosis  Peptic ulcers  Raynaud’s symptoms You’ve got enough problems!!
  9. 9. Alcohol  Alcohol has specific problematic effects  Empty calories  Increased ulcer risk with NSAIDs  Increased triglycerides  Worsens bone density  Can never be taken if on methotrexate  Modest intake is OK for many – check with your doctor
  10. 10. Drugs and Supplements  Illicit drugs and prescription drugs don’t mix  Unproven vitamin and dietary supplements may also be dangerous – little research, combination effects unknown  Vitamins and supplements not regulated by the FDA  Beware of “immune boosters” sold in health food and vitamin stores  Avoid Echinacea, St. John’s Wart, Melatonin  Let your doctor know about any of the above
  11. 11. Nutrition and Weight Control  General advice  Heart-healthy diet: low fat, Mediterranean type diet  Limit meats, use non-fat dairy products, olive oil is good, fatty fishes are good  Lots of high fiber fresh fruits and vegetables  Whole grains and complex carbohydrates  Nuts  Limit salt  Avoid processed foods  Limit calories
  12. 12. Nutrition and Weight Control  When on steroids:  5mg per day is the threshold for weight gain  starts within 2 months  25% of patients on more than 7.5 mg for 6 months become Cushingoid  After 2 years average 4-8% increase in body weight even on low doses  Weight gain is the most common self-reported side effect by patients on steroids  Shape change may happen even in those who don’t gain weight
  13. 13. Nutrition and Weight Control  Hunger is extreme! The only way to avoid weight gain is vigorous healthy diet with calorie control and exercise  Try drinking water before your meal  Eat the protein first, satisfies hunger more than carbs so you eat less  Stock up on healthy low cal snacks – raw veggies, brown rice crackers, low salt soups, reduced fat mini-cheeses  Use a scale
  14. 14. Exercise Hard to do when you are in pain and exhausted BUT SO IMPORTANT BECAUSE:  Maintains cardiovascular fitness (brisk walking 30 minutes 3 times per week for 30 minutes is minimal requirement)  Helps with weight control, energy, and bone density  Reduces pain and fatigue  Muscle strengthening counters atrophy from steroids and reduces fall risk  Upper back extension and posture training helps reduce osteoporosis effects  Builds body confidence and emotional well-being  Avoid heavy weights: tendons weaken from steroids  Sanitize gym equipment (MRSA)  Listen to your body: PAIN = NO GAIN
  15. 15. Controlling Stress  Easier said than done  Exercise  Yoga  Meditation and relaxation techniques  Counseling  Peer support  Be cautious about friends’ and internet information, especially individual stories  Take a break if you need it - FMLA
  16. 16. It’s not only about lupus…  Take meticulous care of your general health and preventive health  Immunizations including HPV for young women  Periodic check-ups including BP, blood sugar and cholesterol, thyroid and vitamin D levels  PAP smears  Bone density if on steroids  Mammograms and colonoscopy when you are old enough  Eye exams  Dental follow-up
  17. 17. Look your best….  Hair  Skin  Clothes that fit  Pamper yourself!  Secret weapon....carry a picture from before you were sick.....you will look better again
  18. 18. Partner with your Health Team  Primary internist  Rheumatologist  Dermatologist  Ophthalmologist  Nephrologist  Obstetrician-Gynecologist  Physical and/or occupational therapist  Counselor/therapist Communication is the key
  19. 19. Partner with your Home Team  Family  Partner or spouse  Friends  Neighbors  Work Colleagues  Lupus support group  The SLE Lupus Foundation You are not alone!
  20. 20. Stay Informed  Know your body  Know medication side effects  Know signs of a flare  News flashes often lead to disappointment  Let your doctor know if you are open to the idea of participating in research – you may help yourself and many others  www.clinicaltrials.gov
  21. 21. Control what you can, manage what you can’t, and do NOT blame yourself….
  22. 22. You are so much more than lupus…… …lead your life to the fullest!
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