1. Lupus Health Passport

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 transition
General information and helpful tips

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. CLASSIFICATION CRITERIA
FOR THE DIAGNOSIS OF LUPUS
Malar (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 if
swelling is observed. Wrists, fingers and knees are most commonly affected.
Serositis: An inflammation of the tissue lining surrounding your heart
or your lungs.
Renal disorder: Early kidney involvement can be detected through simple blood
and urine tests.
Neurological disorder: Common symptoms are headaches, dizziness, memory
loss, and occasionally seizures and rarely psychosis.
Hematological disorder: These disorders are caused by autoantibodies that
attack red blood cells (anemia), white blood cells (leucopenia) and/or platelets
(thrombocytopenia).
Immunological disorder: These blood disorders are caused by an increased
amount of autoanibodies such as anti-DNA and antiphospholipid antibodies.
Abnormal ANA titer: Antinuclear antibodies (ANA) occur in almost all persons
who have lupus.

5. CLASSIFICATION CRITERIA FOR LUPUS
This section is to be completed by your lupus doctor or nurse.
Symptom if present month/year
Malar rash
Discoid rash
Photosensitivity
Oral ulcers
Arthritis
Serositis (pericarditis or pleuritis)
Renal disorder
Neurological disorder (seizures or psychoses)
Hematological disorders
Immunological disorders
Abnormal ANA titer
4

6. HOSPITAL ADMISSIONS
Date Hospital Doctor Reasons for admission
5

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. NOTES

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/yr
Do I have insurance authorization
for this visit?
Do I need any permission letters
for my teachers?
Were my blood test results sent
to 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. QUESTIONS FOR MY DOCTOR
Date:
(dd/mmm/yr)
Yes/No Were my questions answered?
10

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. MEDICATIONS COMMONLY USED TO TREAT LUPUS
Medication Main reason for use Common side effects Precautions
Steroids Moderate to severe Mood changes, increased Symptoms of infection may
Prednisone 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 2
Methotrexate used for nephritis, arthritis, decreased appetite), fatigue. months (as recommended by
cyclophosphamide 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 eye
hydroxychloroquine inflammation. Most and rash. In rare cases, it examinations performed by
(PlaquenilR) frequently prescribed for can cause damage to the an ophthalmologist yearly, or
chloroquine (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 antacids
naproxen (NaprosynR) pericarditis and pleuritis. to protect the stomach.
diclofenac (VoltarenR) Your doctor may recommend
celecoxib (CelebrexR) another medication that would
protect your stomach. Inform
your doctor immediately, if you
have bleeding in your stool
Aspirin 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 upset
promotebone health by prednisone stomach and constipation. stomach. Make sure your diet
Calcium, Vitamin D is rich in fiber.

13. MEDICATIONS
Date: 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. MEDICATIONS
Date: 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. MEDICATIONS
Date: 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. notes
17

17. 4 Blood test results
NOTES
18-19

18. BLOOD AND URINE TESTS
BLOOD 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 that
Leucopenia refers to a low white blood should be followed closely when
cell count. considering pregnancy.
Hemoglobin: This is a protein in the red Anticardiolipid antibodies and lupus
blood cells that contains iron and
anticoagulant: These antibodies are
transports oxygen throughout the body.
associated with an increased risk
If hemoglobin falls below a set point,
of developing blood clots.
this is called anemia.
HsCRP (high sensitivity C reactive
Platelets: Platelets help to stop
protein): This test assesses the level
bleeding. 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 frequently
the function of fighting infection.
in persons who have lupus.
Creatinine: A measure of kidney
function. URINE TESTS
AST ALT, alkaline phosphatase Urinalysis: measures glucose, protein,
(Alk.Phos): These are enzymes found white and red cells, and casts in the urine.
in the liver. This test may be abnormal
Protein/Creatinine ratio: measures
if there is a liver problem.
protein and creatinine excreted in
C3 and C4: Measurements of the urine on a single urine test.
inflammation. A decrease may be
24 hour urine: measures protein and
associated with inflammation.
creatinine excretion in the urine over
Anti-DNA: This is an autoantibody a 24 hour period.
which may be associated with lupus

19. BLOOD TEST RESULTS
Date normal
dd/mmm/yr value
White blood cells
Hemoglobin
Platelets
Lymphocytes
Creatinine
AST
ALT
Alkaline phosphotase
C3
C4
DNA
21

20. BLOOD TEST RESULTS
Date normal
dd/mmm/yr value
Anti-Ro/SSA
Anticardiolipin
antibodies gpl/mpl
Lupus
anticoagulant
CRP
ANA
22

21. URINE TEST RESULTS
Date normal
dd/mmm/yr value
Protein
White blood
cells
Red blood
cells
Casts
24 hour protein
24 hour creatinine
clearance
23

22. notes
24

23. Staying healthy 5
(Personalized treatment plans)
NOTES
25-26

24. STAyINg HEALTHy
General 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, bicycling
or participating in school PE or organized sports.
Nutrition: Maintaining a healthy and well balanced diet is also important for your
health. Even if you are busy, it is important for you to eat three meals a day, with
healthy 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 exercise
and a healthy diet.
Avoiding Cigarettes/Alcohol/Drugs: It is very important for you to try to avoid
harmful activities including smoking cigarettes, drinking alcohol and using street
drugs such as, marijuana. All of these have the potential to harm your body and
make 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 a
time when the disease is under good control.In addition, some of the medications
you may be taking could have a bad effect on a developing baby. If you are sexually
active, it is extremely important that you use are using methods to prevent
pregnancy. This is an important topic to discuss with your doctor.
10

25. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
28

26. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
29

27. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
30

28. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
31

29. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
32

30. TREATMENT PLAN FOR STAYING HEALTHY
Date:
(dd/mmm/yr)
Risk factor Yes/No Plan
Exercise
Nutrition
Smoking
Alcohol
Other drugs
Pregnancy prevention
33

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). Smaller
new bone. If your body becomes unable to replace old bone amounts are found in dark green leafy vegetables. Several brands
fast enough, this will result in thin bone that will break easily. of cereal and fruit juices have added calcium. Check labels as the
Persons with lupus may be more prone to bone loss. Dual energy amount can vary from product to product. Vitamin D is essential
X-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 of
The DXA should be repeated every two years or, yearly, if you have vitamin D through your diet alone. The best source is enriched milk
risk factors for bone loss such as, taking prednisone over a long (milk that has vitamin D added). Small amounts are found in egg
period of time or in large doses. Bone loss can be reversible when yolks, fish and liver. If you are unable to get the recommended
treated with a class of drugs called, bisphosphonates. These amounts of calcium and vitamin D through your diet, they can be
medications are recommended if your DXA shows bone loss. taken as supplements, or vitamins. A regular daily multivitamin
Also, 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 these
medications are harmful to the fetus; therefore, they must not Smoking: Recent studies have shown that smoking makes bone loss
be 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, stair
Not eating enough calcium and vitamin D: A daily intake of elemental climbing, jogging, aerobics) helps make bone stronger and
calcium 1000mg is recommended for teenaged girls and young adult prevent bone loss.
women.. If you are taking prednisone, you need more calcium, and
it is recommened you take in 1500 mg of elemental calcium daily.
34

32. TREATMENT PLAN FOR PREVENTION OF OSTEOPOROSIS
Date T score of
Risk factor Yes/No Plan
dd/mmm/yr spine/hip
Low calcium diet
Smoking
Lack of exercise
Date T score of
Risk factor Yes/No Plan
dd/mmm/yr spine/hip
Low calcium diet
Smoking
Lack of exercise
35

33. TREATMENT PLAN FOR PREVENTION OF OSTEOPOROSIS
Date T score of
Risk factor Yes/No Plan
dd/mmm/yr spine/hip
Low calcium diet
Smoking
Lack of exercise
Date T score of
Risk factor Yes/No Plan
dd/mmm/yr spine/hip
Low calcium diet
Smoking
Lack of exercise
36

34. Routine screening AND 6
clinic appointments
NOTES
37-38

35. ROUTINE SCREENING
AND CLINIC APPOINTMENTS
Rheumatology clinic appointments: An overall check of your lupus is recommended
every four months or more frequently, as recommended, by your doctor.
Annual physical: A yearly physical exam with your family doctor to assess all non lupus
heath problems.
Dual energy X-ray absorptiometry (DXA): This test should be done every 2 years. It is
recommended 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 you
are taking hydroxychloroquine (PlaquenilR) or yearly, if you are taking prednisone.
This may be done more frequently if you are taking chloroquine (AralenR) or have been
taking these medications for many years.
Vaccines: Persons with lupus are more susceptible to infections. Vaccines help prevent
certain 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 meningitis
Sunscreen: Exposure to sunlight may cause a flare. Minimize exposure to sunlight by
staying out of sunlight during peak hours, wearing sunscreen SPF 45 or higher, and use
protection such as a hat when you are outside in the sun.
Medic alert bracelet: It is recommended that you wear a medic alert bracelet. Information
on how to obtain a medic-alert bracelet can be found at www.medicalert,org.

36. IMPORTANT DATES TO REMEMBER
Date Date Date Date
dd/mmm/yr dd/mmm/yr dd/mmm/yr dd/mmm/yr
Rheumatology clinic appointment
Annual physical with family doctor
DXA
Ophthalmology appointment
PAP smear
Ophthalmologist
Dermatologist
Influenza vaccine
Pneumovax
Menactra vaccine
40

37. APPOINTMENTS
Date Time Doctor Reasons for appointment
41

38. APPOINTMENTS
Date Time Doctor Reasons for appointment
42

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. Self management 7
and transition
What is transition? As you get older (over age 16 yrs), you will need to learn to become
more 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 get
you ready for the time when you will need to transfer your care from a pediatric to an
adult rheumatologist. This is referred to as the “transition” process.
Every 1-2 years, your rheumatology team members will review the Transition Checklist
with you. We don’t expect you to be able to do everything on your own now, but we will
it expect it of you by the time you graduate from our clinic.
44-45

41. CAn you or do you… dATE ACCompLishEd:
1 maintain a personal medical file
2 prepare and ask questions of your doctors
3 know medication names, purpose, and side effects
4 take medications as directed by your doctor
without prompting, or without help from your parents
5 get your own prescriptions filled and refilled
6 schedule your own medical appointments
7 keep a calendar of appointments
8 arrange transportation to medical visits
9 have and know how to use a thermometer
and other health tools
10 know symptoms of your condition and when
to contact your doctor
11 know where to get reproductive health care such
as birth control and family planning information
12 take care of own menstrual needs and keep record of periods
13 know or carry emergency phone numbers
14 know about medical insurance and carry insurance information
15 know about possible changes in health insurance as you get older
16 have a regular primary care doctor
17 know how to make an appointment with your doctor

42. General information 8
and helpful tips
NOTES
47-48

43. GENERAL INFORMATION AND HELPFUL TIPS
Pediatrician/family doctor: It is important to Skin rashes: Exposure to sunlight may cause
have a pediatrician or family doctor who can a flare. Minimize exposure to sunlight by
follow you for sick visits, and general medi- staying out of sunlight during peak hours
cal care problems. and wearing sunscreen SPF 45 or greater.
Oral ulcers: Eat soft, non spicy foods. Try
Birth control: It is very important to discuss
rinsing your mouth with a solution of warm
birth control with your doctor. Pregnancy is
water and a small amount of salt. Smoking
considered to be a high risk in women who
will worsen symptoms. Ointments containing
have lupus. It is an important decision that
pain killers can also be helpful.
calls for good timing. Your blood tests and
medications 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 your
know 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 by
changes in sleep and appetite, avoiding inflammation or infection. Some of the
your friends, and/or feeling more irritable, medications you are taking may suppress
hopeless or guilty). Help is available. your immune system and make you more
prone to infection. Avoid contact with
Stress reduction: There are many techniques
persons who are sick. Wash your hands
people use to manage stress, such as exercise,
frequently. Have annual flu shots.
yoga, meditation, and others. Find out
what works best for you. Taking a few deep Alopecia (hair loss): Hair loss occurs when
breaths can be very effective for quick the hair follicles (part of the skin from which
reduction of stress. hairs grow) are inflamed. Hair may fall out
in small round patches. The hair may or may
Alternative and complementary therapies:
not grow back depending if scarring occurs.
It is important to let your doctor know if you
are 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. Arthritis: The arthritis associated with lupus rarely Kidney disease: Symptoms of kidney involvement are
causes joint damage. Your doctor may prescribe not always apparent. It is extremely important to
anti inflammatory medications to relieve the pain have routine blood and urinalysis tests. Also, periodic
and swelling. Avoid over the counter medications 24 hour urine collections are important measurements
unless 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 have
the affected joints as much as possible. lupus are taking several medications, and this
Serositis: Inflammation around the lining of the can be costly. If you need information about
heart or lungs is seen frequently in persons who how to deal with the cost of medications, please
have lupus. Inflammation around the heart, refer to the Resources page at the back of this
the 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 causes
chest, neck and arms, worsening when lying down a sequence of color changes (white, followed by
and lessening when sitting. Inflammation around blue and red) to the skin when exposed to cold
the lungs is called pleuritis. It causes pain on the temperatures and/or emotional stress. Dress
side and/or back of your chest. Both conditions warmly, avoid smoking, try relaxation and
are easily treated. If you experience these symp- biofeedback techniques. Your doctor may
toms, you should see your physician immediately prescribe a medication to help.
or go to your nearest emergency department
for evaluation. 50

45. notes
51

46. RESOURCES
CaNIOS www.CaNIOS.ca
Rheuminations www.dxlupus.org
CARRA (Childhood Arthritis, & Rheumatology Research Alliance) www. carragroup.org
Lupus Foundation of America 1 800 558-0121 www.lupus.org
Arthritis Foundation www.arthritis.org
NIAMS http://www.niams.nih.gov/Health_Info/Lupus/default.asp
CDC- Healthy Living http://www.cdc.gov/HealthyLiving/
KidsHealth http://kidshealth.org/teen/diseases_conditions/bones/lupus.html
Hospital for Special Surgery, New York http://www.hss.edu/files/For_Inquiring_Teens_With_Lupus.pdf
Healthy and Ready to Work www.hrtw.org
Medic-Alert www.medicalert.org
3

47. LUPUS FACTS L U P U S F A C T S
www.matteauparent.com
• 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 lupus.life.
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