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Managing Lupus and Maintaining a Healthy Lifestyle
1. Robin Dibner, M.D.
Lenox Hill Hospital
S.L.E. Lupus Foundation
New York City Hospital Tour
October 13, 2010
2. Today is the best time in
the history of the world to
have lupus….and
tomorrow will be even
better…
3. Control what you can,
manage what you can’t,
and do NOT blame
yourself….
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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Control what you can,
manage what you can’t,
and do NOT blame
yourself….
22. You are so much more
than lupus……
…lead your life to the
fullest!