This document outlines lifestyle recommendations for managing lupus, including avoiding triggers like infections, sun exposure, and certain drugs. It recommends getting adequate sleep, avoiding smoking and excessive alcohol, and exercising regularly. Nutritious eating and maintaining a healthy weight while on steroids is also discussed. The importance of stress management, preventative healthcare, appearance, social support systems, and clinical trial participation are also covered. The overall message is that patients should focus on controlling modifiable factors while not blaming themselves for things outside their control.

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!