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Managing Lupus and Maintaining a Healthy Lifestyle

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    Managing Lupus and Maintaining a Healthy Lifestyle Managing Lupus and Maintaining a Healthy Lifestyle Presentation Transcript

    • 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 immunosuppressants
        • Hand sanitizers and hand washing
        • Sensible avoidance of sick contacts
        • Avoid undercooked meat, poultry, eggs, and fish
        • Travel with a thermometer
    • 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
    • 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
    • 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
    • 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!!
    • 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
    • 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
    • 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
    • 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
    • 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
    • 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
    • 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
    • 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
    • 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
    • Partner with your Health Team
      • Primary internist
      • Rheumatologist
      • Dermatologist
      • Ophthalmologist
      • Nephrologist
      • Obstetrician-Gynecologist
      • Physical and/or occupational therapist
      • Counselor/therapist
      • Communication is the key
    • Partner with your Home Team
      • Family
      • Partner or spouse
      • Friends
      • Neighbors
      • Work Colleagues
      • Lupus support group
      • The SLE Lupus Foundation
      • You are not alone!
    • 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
    • Control what you can, manage what you can’t, and do NOT blame yourself….
    •