Robin Dibner, M.D.Lenox Hill Hospital

S.L.E. Lupus FoundationNew 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 TriggersAvoid infection:

Annual flu shotPneumococcal vaccineConsider “shingles shot” if you are not on

immunosuppressantsHand sanitizers and hand washingSensible avoidance of sick contactsAvoid undercooked meat, poultry, eggs, and

fishTravel with a thermometer

Avoiding TriggersThe sun is not your friend!

Photosensitivity is common and can trigger flares

Hydroxychloroquine is a photosensitizerAvoid peak sun hours (10 -2), seek shadeProtective clothingHatsUVA and B sunblock, SPF 30 is minimum – USE

IT!UVA and B protective sunglasses

Avoiding TriggersMiscellaneous triggers are individualized:

Sulfa drugs – avoid if there are other alternatives

Other drugs (?)Hormones – The Pill and hormone IUDs,

implantsPregnancy – if lupus has been poorly controlledStress 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 infectionSleep and rest have anti-inflammatory effects

Important to plan well to get enough sleepTry for extra rest periods during flaresKnow your limits

SmokingDON’T – get help Smoking raises the risk for:

Blood clotsCoronary artery disease and strokeOsteoporosisPeptic ulcersRaynaud’s symptoms

You’ve got enough problems!!

AlcoholAlcohol has specific problematic effects

Empty caloriesIncreased ulcer risk with NSAIDsIncreased triglyceridesWorsens bone densityCan never be taken if on methotrexate

Modest intake is OK for many – check with your doctor

Drugs and SupplementsIllicit drugs and prescription drugs don’t mixUnproven 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, MelatoninLet your doctor know about any of the above

Nutrition and Weight ControlGeneral 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 ControlWhen on steroids:

5mg per day is the threshold for weight gainstarts within 2 months25% 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 dosesWeight gain is the most common self-reported

side effect by patients on steroidsShape 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 mealEat the protein first, satisfies hunger more than

carbs so you eat lessStock up on healthy low cal snacks – raw

veggies, brown rice crackers, low salt soups, reduced fat mini-cheeses

Use a scale

ExerciseHard 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 StressEasier said than done

ExerciseYogaMeditation and relaxation techniquesCounselingPeer supportBe 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 womenPeriodic check-ups including BP, blood sugar and

cholesterol, thyroid and vitamin D levelsPAP smearsBone density if on steroidsMammograms and colonoscopy when you are old

enoughEye examsDental follow-up

Look your best….

HairSkin Clothes that fitPamper yourself!

Secret weapon....carry a picture from before you were sick.....you will look better again

Partner with your Health TeamPrimary internistRheumatologistDermatologistOphthalmologistNephrologistObstetrician-GynecologistPhysical and/or occupational therapistCounselor/therapist

Communication is the key

Partner with your Home TeamFamilyPartner or spouseFriendsNeighborsWork ColleaguesLupus support groupThe SLE Lupus Foundation

You are not alone!

Stay InformedKnow your bodyKnow medication side effectsKnow signs of a flare

News flashes often lead to disappointmentLet 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….