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Lupus a

  1. 1. Lupus Health Passport
  2. 2. Personal health profile Preparing for your clinic visit Medications Blood test results Staying healthy (Personalized treatment plans) Routine screening and clinic appointments Self-management and transitionGeneral information and helpful tips
  3. 3. 1 Personal CONTACT INFORMATION Home Phone Cell Phone E-Mail Birth Date (dd/mm/yr) Insurance company Insurance policy number Name of person to contact in case of emergency Phone Number Important names and telephone contact information Rheumatology clinic secretary Phone Rheumatology doctor Phone Rheumatology nurse Phone Pediatrician/family doctor Phone Ophthalmologist Phone Pharmacy/Drugstore Phone Other specialists Phone Phone Phone Phone 1-2
  4. 4. CLASSIFICATION CRITERIAFOR THE DIAGNOSIS OF LUPUSMalar (butterfly) rash: appears as a rash over the nose and cheeks.Discoid rash: appears as coin shaped lesions most often on sun exposed skin.Photosensitivity: an abnormal reaction to ultra violet rays of the sun.Exposure to sunlight can cause rash and flare.Oral/Nasal Ulcers: Painful or painless erosions in the mouth or nose.Arthritis: Although joint pain is common in lupus, arthritis is only present ifswelling is observed. Wrists, fingers and knees are most commonly affected.Serositis: An inflammation of the tissue lining surrounding your heartor your lungs.Renal disorder: Early kidney involvement can be detected through simple bloodand urine tests.Neurological disorder: Common symptoms are headaches, dizziness, memoryloss, and occasionally seizures and rarely psychosis.Hematological disorder: These disorders are caused by autoantibodies thatattack red blood cells (anemia), white blood cells (leucopenia) and/or platelets(thrombocytopenia).Immunological disorder: These blood disorders are caused by an increasedamount of autoanibodies such as anti-DNA and antiphospholipid antibodies.Abnormal ANA titer: Antinuclear antibodies (ANA) occur in almost all personswho have lupus.
  5. 5. CLASSIFICATION CRITERIA FOR LUPUS This section is to be completed by your lupus doctor or nurse. Symptom if present month/yearMalar rashDiscoid rashPhotosensitivityOral ulcersArthritisSerositis (pericarditis or pleuritis)Renal disorderNeurological disorder (seizures or psychoses)Hematological disordersImmunological disordersAbnormal ANA titer 4
  6. 6. HOSPITAL ADMISSIONSDate Hospital Doctor Reasons for admission 5
  7. 7. 2 Preparing for your clinic visit It is important to be prepared for your appointments with your doctor. Some things that you may need from your doctor include permission letters for your school or for summer camp (modified physical education, sick notes, permission to wear a hat in school, etc.) Don’t forget to bring all your medications with you. Be sure to write down any questions you may have. 6-7
  8. 8. NOTES
  9. 9. PREPARING FOR MY VISIT Please fill in your visit date and place √ beside items when completed Date Date Date Date dd/mmm/yr dd/mmm/yr dd/mmm/yr dd/mmm/yrDo I have insurance authorizationfor this visit?Do I need any permission lettersfor my teachers?Were my blood test results sentto my doctor?Do I have all my meds ready to bring?Did I do my routine blood tests?Do I need any prescriptions renewed? 9
  10. 10. QUESTIONS FOR MY DOCTORDate: (dd/mmm/yr) Yes/No Were my questions answered? 10
  11. 11. 3 Medications How is Lupus treated? Helpful Tips for Remembering Lupus can be managed very to Take Your Medications: successfully with a variety of - Use a pill box medications which are discussed in - Keep track with a chart or calendar more detail below. It is very important - Ask someone to help you remember that you follow your doctor’s instructions - Have a “Don’t forget” sticker and take your medicines every day. on the mirror to remind you You should talk with your doctor if - Take them around a daily activity you are having difficulty taking like brushing your teeth or with meals your medicines. - Set your watch or pager to remind you! 11-12
  12. 12. MEDICATIONS COMMONLY USED TO TREAT LUPUS Medication Main reason for use Common side effects PrecautionsSteroids Moderate to severe Mood changes, increased Symptoms of infection mayPrednisone inflammation. Used mainly glucose in the blood, weight be hidden, avoid exposure for severe lupus symptoms. gain, acne, restlessness. With to infection. It is dangerous prolonged use, side effects to stop this medication may include, osteoporosis abruptly. Your doctor will (bone loss) and vascular give you a tapering schedule necrosis (decreased blood when it is time to lower supply to bone causing the dose. death to bone tissue).Immunosuppressants Moderate to severe Gastrointestinal complaints Avoid exposure to infections.azathioprine (ImuranR) inflammation. Frequently (nausea, vomiting, diarrhea, Blood tests every 1 to 2Methotrexate used for nephritis, arthritis, decreased appetite), fatigue. months (as recommended bycyclophosphamide pleuritis and pericarditis. Cyclophosphamide may your doctor) to measure the(CytoxanR) Can reduce the need for cause bladder disorders and blood cell counts, kidney and higher doses of steroids. infertility. liver function, etc.cyclosporin (NeoralR)mycophenolate mofetil(CellceptR)Antimalarials Mild to moderate Gastrointestinal complaints Important to have eyehydroxychloroquine inflammation. Most and rash. In rare cases, it examinations performed by(PlaquenilR) frequently prescribed for can cause damage to the an ophthalmologist yearly, orchloroquine (AralenR) symptoms of arthritis, retina. more often, as recommended skin rashes, mouth ulcers. by your doctor.Non steroidal Mild to moderate Gastrointestinal complaints,anti-inflammatory agents inflammation. Used ringing in ears, dizziness,ibuprofen (AdvilR) mainly to treat arthritis, gastric ulcers and bleeding. Take with food and/or antacidsnaproxen (NaprosynR) pericarditis and pleuritis. to protect the stomach.diclofenac (VoltarenR) Your doctor may recommendcelecoxib (CelebrexR) another medication that would protect your stomach. Inform your doctor immediately, if you have bleeding in your stoolAspirin Inflammation Upset stomach, ringing in (red or black in color). Blood thinner ears, dizziness, gastric ulcers and bleeding.Medications to Prevent bone loss caused Calcium may cause upset Take with food to prevent upsetpromotebone health by prednisone stomach and constipation. stomach. Make sure your dietCalcium, Vitamin D is rich in fiber.
  13. 13. MEDICATIONSDate: Date: Date: Date: Date: (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) Medication and dose Medication and dose Medication and dose Medication and dose Medication and dose 14
  14. 14. MEDICATIONSDate: Date: Date: Date: Date: (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) Medication and dose Medication and dose Medication and dose Medication and dose Medication and dose 15
  15. 15. MEDICATIONSDate: Date: Date: Date: Date: (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) (dd/mmm/yr) Medication and dose Medication and dose Medication and dose Medication and dose Medication and dose 16
  16. 16. notes 17
  17. 17. 4 Blood test results NOTES 18-19
  18. 18. BLOOD AND URINE TESTSBLOOD TESTS disease activity including,WBC ( White blood cell count): White inflammation of the kidneys.blood cells help to fight infection. Anti-Ro/SSA: An autoantibody thatLeucopenia refers to a low white blood should be followed closely whencell count. considering pregnancy.Hemoglobin: This is a protein in the red Anticardiolipid antibodies and lupusblood cells that contains iron and anticoagulant: These antibodies aretransports oxygen throughout the body. associated with an increased riskIf hemoglobin falls below a set point, of developing blood clots.this is called anemia. HsCRP (high sensitivity C reactivePlatelets: Platelets help to stop protein): This test assesses the levelbleeding. Thrombocytopenia refers to of inflammation in the body.a decrease in the number of platelets. ANA (antinuclear antibody):Lymphocytes: Important cells with This antibody is found frequentlythe function of fighting infection. in persons who have lupus.Creatinine: A measure of kidneyfunction. URINE TESTSAST ALT, alkaline phosphatase Urinalysis: measures glucose, protein,(Alk.Phos): These are enzymes found white and red cells, and casts in the the liver. This test may be abnormal Protein/Creatinine ratio: measuresif there is a liver problem. protein and creatinine excreted inC3 and C4: Measurements of the urine on a single urine test.inflammation. A decrease may be 24 hour urine: measures protein andassociated with inflammation. creatinine excretion in the urine overAnti-DNA: This is an autoantibody a 24 hour period.which may be associated with lupus
  19. 19. BLOOD TEST RESULTSDate normaldd/mmm/yr valueWhite blood cellsHemoglobinPlateletsLymphocytesCreatinineASTALTAlkaline phosphotaseC3C4DNA 21
  20. 20. BLOOD TEST RESULTSDate normaldd/mmm/yr valueAnti-Ro/SSAAnticardiolipinantibodies gpl/mplLupusanticoagulantCRPANA 22
  21. 21. URINE TEST RESULTSDate normaldd/mmm/yr valueProteinWhite bloodcellsRed bloodcellsCasts24 hour protein24 hour creatinineclearance 23
  22. 22. notes 24
  23. 23. Staying healthy 5 (Personalized treatment plans)NOTES 25-26
  24. 24. STAyINg HEALTHyGeneral Information: In addition to taking your medications regularly,there are lots of things that you can do to help you stay healthy!Exercise: Regular aerobic exercise is an important part of staying healthy.Recommended aerobic activities include walking, running, swimming, bicyclingor participating in school PE or organized sports.Nutrition: Maintaining a healthy and well balanced diet is also important for yourhealth. Even if you are busy, it is important for you to eat three meals a day, withhealthy snacks as needed. This is particularly important if you are taking steroids(Prednisone), as this medicine tends to make you more hungry, and as a result,gain weight. The weight gain from Prednisone can be limited by increased exerciseand a healthy diet.Avoiding Cigarettes/Alcohol/Drugs: It is very important for you to try to avoidharmful activities including smoking cigarettes, drinking alcohol and using streetdrugs such as, marijuana. All of these have the potential to harm your body andmake your Lupus worse.Pregnancy and Lupus: Women with Lupus can have healthy pregnancies. However,it is very important that these pregnancies are well planned, and occur during atime when the disease is under good control.In addition, some of the medicationsyou may be taking could have a bad effect on a developing baby. If you are sexuallyactive, it is extremely important that you use are using methods to preventpregnancy. This is an important topic to discuss with your doctor. 10
  25. 25. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 28
  26. 26. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 29
  27. 27. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 30
  28. 28. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 31
  29. 29. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 32
  30. 30. TREATMENT PLAN FOR STAYING HEALTHYDate: (dd/mmm/yr)Risk factor Yes/No PlanExerciseNutritionSmokingAlcoholOther drugsPregnancy prevention 33
  31. 31. RISK FACTORS FOR BONE LOSS (OSTEOPOROSIS, OSTEOPENIA)Your body keeps your bones healthy by replacing old bone with Calcium is found in dairy products (milk, cheese, yogurt). Smallernew bone. If your body becomes unable to replace old bone amounts are found in dark green leafy vegetables. Several brandsfast enough, this will result in thin bone that will break easily. of cereal and fruit juices have added calcium. Check labels as thePersons with lupus may be more prone to bone loss. Dual energy amount can vary from product to product. Vitamin D is essentialX-ray absorptiometry (DXA) is a test that measures bone strength. for the absorption of calcium (getting calcium into your body). Unfortunately, it is more difficult to get the daily requirements ofThe DXA should be repeated every two years or, yearly, if you have vitamin D through your diet alone. The best source is enriched milkrisk factors for bone loss such as, taking prednisone over a long (milk that has vitamin D added). Small amounts are found in eggperiod of time or in large doses. Bone loss can be reversible when yolks, fish and liver. If you are unable to get the recommendedtreated with a class of drugs called, bisphosphonates. These amounts of calcium and vitamin D through your diet, they can bemedications are recommended if your DXA shows bone loss. taken as supplements, or vitamins. A regular daily multivitaminAlso, you may be prescribed these medications as preventative has vitamin D in it, but not much calcium.therapy if you are taking prednisone. It is unknown if thesemedications are harmful to the fetus; therefore, they must not Smoking: Recent studies have shown that smoking makes bone lossbe taken if pregnant or planning pregnancy. worse. This is another reason why smoking is a bad thing for girls and women with lupus.RISK FACTORS FOR BONE LOSS THAT YOU CAN CHANGE: Not enough exercise: Weight bearing exercise (walking, stairNot eating enough calcium and vitamin D: A daily intake of elemental climbing, jogging, aerobics) helps make bone stronger andcalcium 1000mg is recommended for teenaged girls and young adult prevent bone loss.women.. If you are taking prednisone, you need more calcium, andit is recommened you take in 1500 mg of elemental calcium daily. 34
  32. 32. TREATMENT PLAN FOR PREVENTION OF OSTEOPOROSISDate T score of Risk factor Yes/No Plandd/mmm/yr spine/hip Low calcium diet Smoking Lack of exerciseDate T score of Risk factor Yes/No Plandd/mmm/yr spine/hip Low calcium diet Smoking Lack of exercise 35
  33. 33. TREATMENT PLAN FOR PREVENTION OF OSTEOPOROSISDate T score of Risk factor Yes/No Plandd/mmm/yr spine/hip Low calcium diet Smoking Lack of exerciseDate T score of Risk factor Yes/No Plandd/mmm/yr spine/hip Low calcium diet Smoking Lack of exercise 36
  34. 34. Routine screening AND 6 clinic appointmentsNOTES 37-38
  35. 35. ROUTINE SCREENINGAND CLINIC APPOINTMENTSRheumatology clinic appointments: An overall check of your lupus is recommendedevery four months or more frequently, as recommended, by your doctor.Annual physical: A yearly physical exam with your family doctor to assess all non lupusheath problems.Dual energy X-ray absorptiometry (DXA): This test should be done every 2 years. It isrecommended to have this test done yearly if you have risk factors for osteoporosis(e.g. taking prednisone over a long period of time or in large doses).Ophthalmologist: It is recommended to have an eye examination every 6 months if youare taking hydroxychloroquine (PlaquenilR) or yearly, if you are taking prednisone.This may be done more frequently if you are taking chloroquine (AralenR) or have beentaking these medications for many years.Vaccines: Persons with lupus are more susceptible to infections. Vaccines help preventcertain serious infections. Influenza vaccine: It is highly recommended to have a flu shot annually. Pneumovax: Pneumococcal infections are caused by a germ called Streptococcus pneumoniae. This germ can cause several different infections, including pneumonia, and can be more severe in lupus patients.. Menactra: Meningitis is an infection of fluid surrounding the brain and the spinal cord. This vaccine is prescribed to prevent meningitisSunscreen: Exposure to sunlight may cause a flare. Minimize exposure to sunlight bystaying out of sunlight during peak hours, wearing sunscreen SPF 45 or higher, and useprotection such as a hat when you are outside in the sun.Medic alert bracelet: It is recommended that you wear a medic alert bracelet. Informationon how to obtain a medic-alert bracelet can be found at www.medicalert,org.
  36. 36. IMPORTANT DATES TO REMEMBER Date Date Date Date dd/mmm/yr dd/mmm/yr dd/mmm/yr dd/mmm/yrRheumatology clinic appointmentAnnual physical with family doctorDXAOphthalmology appointmentPAP smearOphthalmologistDermatologistInfluenza vaccinePneumovaxMenactra vaccine 40
  37. 37. APPOINTMENTSDate Time Doctor Reasons for appointment 41
  38. 38. APPOINTMENTSDate Time Doctor Reasons for appointment 42
  39. 39. AMSLER GRID 1. Test vision with one eye at a time, and use normal glasses for reading 2. Hold chart at a normal reading distance 3. Stare at central dot and look for distortion or blind spots in the grid. 43
  40. 40. Self management 7 and transitionWhat is transition? As you get older (over age 16 yrs), you will need to learn to becomemore responsible for managing your Lupus on your own. As your rheumatology team,an important part of our job is to help you prepare for managing your Lupus, and to getyou ready for the time when you will need to transfer your care from a pediatric to anadult rheumatologist. This is referred to as the “transition” process.Every 1-2 years, your rheumatology team members will review the Transition Checklistwith you. We don’t expect you to be able to do everything on your own now, but we willit expect it of you by the time you graduate from our clinic. 44-45
  41. 41. CAn you or do you… dATE ACCompLishEd:1 maintain a personal medical file2 prepare and ask questions of your doctors3 know medication names, purpose, and side effects4 take medications as directed by your doctor without prompting, or without help from your parents5 get your own prescriptions filled and refilled6 schedule your own medical appointments7 keep a calendar of appointments8 arrange transportation to medical visits9 have and know how to use a thermometer and other health tools10 know symptoms of your condition and when to contact your doctor11 know where to get reproductive health care such as birth control and family planning information12 take care of own menstrual needs and keep record of periods13 know or carry emergency phone numbers14 know about medical insurance and carry insurance information15 know about possible changes in health insurance as you get older16 have a regular primary care doctor17 know how to make an appointment with your doctor
  42. 42. General information 8 and helpful tipsNOTES 47-48
  43. 43. GENERAL INFORMATION AND HELPFUL TIPSPediatrician/family doctor: It is important to Skin rashes: Exposure to sunlight may causehave a pediatrician or family doctor who can a flare. Minimize exposure to sunlight byfollow you for sick visits, and general medi- staying out of sunlight during peak hourscal care problems. and wearing sunscreen SPF 45 or greater. Oral ulcers: Eat soft, non spicy foods. TryBirth control: It is very important to discuss rinsing your mouth with a solution of warmbirth control with your doctor. Pregnancy is water and a small amount of salt. Smokingconsidered to be a high risk in women who will worsen symptoms. Ointments containinghave lupus. It is an important decision that pain killers can also be helpful.calls for good timing. Your blood tests andmedications should be reviewed with your Fatigue: Pacing oneself is very important.lupus doctor prior to pregnancy. Alternate periods of rest with activity. Keep a fatigue journal, noting your daily activities,Depression: Let your rheumatology team how you feel when you wake up, and yourknow if you are having symptoms of energy levels throughout the day.depression (feeling sad for a long time,unable to enjoy the things you used to enjoy, Fever: Fever is most commonly caused bychanges in sleep and appetite, avoiding inflammation or infection. Some of theyour friends, and/or feeling more irritable, medications you are taking may suppresshopeless or guilty). Help is available. your immune system and make you more prone to infection. Avoid contact withStress reduction: There are many techniques persons who are sick. Wash your handspeople use to manage stress, such as exercise, frequently. Have annual flu, meditation, and others. Find outwhat works best for you. Taking a few deep Alopecia (hair loss): Hair loss occurs whenbreaths can be very effective for quick the hair follicles (part of the skin from whichreduction of stress. hairs grow) are inflamed. Hair may fall out in small round patches. The hair may or mayAlternative and complementary therapies: not grow back depending if scarring occurs.It is important to let your doctor know if youare using alternative therapies (homeopathy, Protect your scalp: use suscreen, wear a hat.reflexology, acupuncture, herbal medicines, A consultation with a dermatologist may help.etc).
  44. 44. Arthritis: The arthritis associated with lupus rarely Kidney disease: Symptoms of kidney involvement arecauses joint damage. Your doctor may prescribe not always apparent. It is extremely important toanti inflammatory medications to relieve the pain have routine blood and urinalysis tests. Also, periodicand swelling. Avoid over the counter medications 24 hour urine collections are important measurementsunless they have been approved by your doctor. of creatinine and protein in the urine.Apply heat or cold to the affected joints. Rest Cost of medications: Most people who havethe affected joints as much as possible. lupus are taking several medications, and thisSerositis: Inflammation around the lining of the can be costly. If you need information aboutheart or lungs is seen frequently in persons who how to deal with the cost of medications, pleasehave lupus. Inflammation around the heart, refer to the Resources page at the back of thisthe condition is called pericarditis. It causes booklet, or talk to your rheumatology team.shortness of breath and pain in the front of your Raynaud’s phenomenon: A condition that causeschest, neck and arms, worsening when lying down a sequence of color changes (white, followed byand lessening when sitting. Inflammation around blue and red) to the skin when exposed to coldthe lungs is called pleuritis. It causes pain on the temperatures and/or emotional stress. Dressside and/or back of your chest. Both conditions warmly, avoid smoking, try relaxation andare easily treated. If you experience these symp- biofeedback techniques. Your doctor maytoms, you should see your physician immediately prescribe a medication to help.or go to your nearest emergency departmentfor evaluation. 50
  45. 45. notes 51
  46. 46. RESOURCESCaNIOS www.CaNIOS.caRheuminations www.dxlupus.orgCARRA (Childhood Arthritis, & Rheumatology Research Alliance) www. carragroup.orgLupus Foundation of America 1 800 558-0121 www.lupus.orgArthritis Foundation www.arthritis.orgNIAMS Healthy Living for Special Surgery, New York and Ready to Work www.hrtw.orgMedic-Alert 3
  47. 47. LUPUS FACTS L U P U S F A C T S • Systemic Lupus Erythematosus (SLE) • Although there is no cure to date, lupus can- Systemic Lupus Erythematosus results from an abnormalityandthe of remissions (a decrease effectively allowing individuals be treated - There is no known cause (SLE) results from an immune system. or absence of symptoms) - a good for to maintain quality of abnormalityLupus is a chronic disease causing can be kept• to a is not contagious. • of the Flares Lupus - Common symptoms are: skin immune system. inflammation that can leadminimum with the proper to damage rashes especially on the face, • There is no known cause for lupus.- Lupus is a chronic organ in the body. medications. to any disease fatigue, fever, oral/nasal - Although there is no cure symptoms are: skinphotosensitivity causing inflammationof lupus fluctuate over time • Symptoms that • Common ulcers, rashes especially on the face, fatigue, fever, sun), can lead to damage flares (an increaseto date, lupus can be treated between to any of symptoms) (sensitivity to the organ in theand remissions (a decreaseeffectively allowing oral/nasal ulcers, photosensitivity loss), arthralgia body. or absence individuals alopecia (hair (sensitivity to the sun), alopecia (hair loss),- Symptoms of oflupus fluctuate can be kept to a a good quality symptoms) - Flares to maintain and arthritis (joint pain and/or arthralgia and arthritis (joint pain and/or of life. minimum with the proper medications over time between flares swelling) and chest pain. swelling) and chest pain. © 2006 All rights reserved (an increase of symptoms) - Lupus is not contagious. 4