The first thing you need to do is obtain a proper diagnosis to determine if you have Pemphigus Vulgaris or another disease. There are two ways of determining if you have PV, a blood test and a biopsy. Therefore, these are the first few questions you should ask your doctor.

1 (a) Will you be taking a biopsy? Yes ______ No _______

(b) Should I have a blood test? Yes ______ No _______

If the answer to both questions is yes, skip to 3.

If the answer to both questions is no

2. How do you know that I have PV? ____________________________________________________________________________

____________________________________________________________________________

3. How do you know that I have Pemphigus Vulgaris and not another form of Pemphigus? _______________________________________________________________________________________________________________________________________________________________

If you have had a blood test, ask this question

4. What is the level of the pemphigus antibodies in my blood?____________________ Please explain what this means. _________________________________________________________________________

Depending on the severity of your PV, most doctors will prescribe a corticosteroid, Prednisone, as the drug to take to bring your illness under control. Typically a dermatologist will prescribe 60 to 200 milligrams or more per day as an initial dosage. This varies from patient to patient. Once the disease is under control (e.g. lesions disappear), the doctor will try to taper your dosage of the drug.

5. (a) Why do you recommend that I take _____ mg a day of Prednisone? ___________________________________________________________________________

If the initial dosage is 60 mg per day or less skip to 5c

If the initial dosage is more than 60 mg per day,

(b) Why are you proposing that I take more than 60 mg of Prednisone a day? Please explain

________________________________________________________________________________________________________________________________________________________

(c) If the drug proposed is not Prednisone, why do you recommend I take _____ mg a day of ______________? ____________________________________________________________________________

6. (a) At what time of the day should I be taking this drug? _________________

(b) Should I be taking it on an empty stomach ______with food _________ or a full meal ____________?

____________________________________________________________________________

7. (a) What is the regimen (e.g. mg per day) for this drug over the coming weeks and months? ___________________________________________________________________________

(b) Why do you recommend this tapering regimen?___________________________________________________________________________________________________________________________________________________________________________

(c) Since a 5 mg / week drop in dosage is difficult for some people at lower dosages of prednisone, is there a point in time when I should taper my dosage by 1 mg?

Steroid Therapy can produce a variety of side effects which vary from patient to patient. There are certain side effects that are considered acceptable and expected by the prescriber (though not by the patient). They are listed below:

Facial fullness (Cushing's syndrome)

Weight gain and increased appetite

Loss of certain minerals such as potassium and calcium

Urinary frequency

Acne

Insomnia, headache, fatigue, euphoria

There are certain side effects that are considered undesirable and dangerous by the prescriber. They are listed below:

Cardivascular system effects such as hypertension (high blood pressure)

Eye complications such as glaucoma

Musculoskeletal effects such as osteoperosis

Central nervous system problems such as seizures

If you experience any of these side effects consult your physician. I am experiencing ____________________. What should I do? ___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

8. I understand that there are other drugs such as dapsone, imuran and cell cept that are used in conjunction with prednisone and / or as maintenance drugs so I can come off steroids. Would any of these drugs be of benefit to me

9. Are there any supplements I should be taking?

(a) Calcium (in what form and at what dosage levels __________________________________________________

(b) Potassium (in what form and at what dosage levels)

__________________________________________________

(c) Magnesium (in what form and at what dosage levels)

__________________________________________________

(d) Vitamin C (in what form and at what dosage levels)

__________________________________________________

(e) Vitamin D (in what form and at what dosage levels)

(f) Any others and why? _________________________________

Drugs such as Prednisone can result in the depletion of certain minerals such as Calcium. The loss of these minerals can make you more susceptible to Osteoperosis. The drugs can also increase the risk of diabetes, glaucoma and cataracts. There are certain tests you can take at certain points in time to monitor the results of these drugs.

10. (a) Would this be a good time to have a bone density test?

Yes ______ No _______

If no, when should I have this test? _______ months

(b) Where can I go to have this test and can you arrange it? ____________________________________________________________________________

____________________________________________________________________________

11. (a) I understand that there are drugs such as Fosomax and Didronel that help offset the loss of calcium from taking prednisone. Are you aware of these drugs and should I have a prescription now? Yes ______ No _______ Which of these drugs do you prefer and why? _____________________________________________________________________________

(b) If yes, should I be taking these drugs with food _________ , with a meal ___________or on an empty stomach _______ ?

12. When should I go to an Opthamologist for an eye examination to test for glaucoma and cataracts? Now _____ 3 months ______ 6 months _____

Who should I see and can you arrange it? ____________________________________________________________________________

13. (a) When should I go for a blood test? ________ weeks / months

(b) Where can I go to take it? ______________

(c) Can you arrange it? Yes _________ No _________

14. What will I learn from the blood test? ___________________________________________

As you can tell from the possible side effects noted above, the treatment of pemphigus will likely include medical advice and treatment from other fields. The responsibility for assembling a team of physicians to assist you in dealing with the disease and its side effects is ultimately yours. Therefore it is important, at an early stage, that you obtain referrals from your dermatologist and family doctor to pull this team together. The following are some of the medical disciplines you may wish to contact, both as a precautionary measure, or in response to specific side effects:

Endocrinologist (adrenal gland issues)

Periodontist (gums)

Oral Pathologist (biopsies)

Cardiologist (heart)

Nephrologist (liver, bladder)

Opthamologist (eyes)

Orthopaedist (bones)

Gastroenterologist (stomach)

Psychiatrist (emotional)

Naturopath (preferably an M.D. as well)

Dietitian

Fitness Instructor

One of the most important questions concerning Pemphigus is the question of remission. It is important to understand the difference between bringing the disease under control at a minimum level of drugs (Clinical Remission) and bringing the disease under control without any drugs (Complete Remission).

15. Please explain to me how you plan to bring this disease under control and what you would define as control or remission? ________________________________________________________________________

________________________________________________________________________

Little is known about the precise relationship between diet and PV. What is known is that certain food substances (e.g.garlic, onions, MSG) can stimulate blisters in some PV patients. Also, some substances (e.g. alcohol) do not mix well with certain drugs (Prednisone). It is also known that weight gain and a feeling of tiredness are common reactions to drugs such as Prednisone.

While there is no body of research that demonstrates that a particular diet can help cure PV, the foods and beverages you consume are the only substances, other than drugs and supplements, that provide nourishment and energy while you are ill. Therefore, a healthy diet can help by limiting weight gain, eliminating foodstuffs that cause blisters and by replacing vital nutrients lost due to the drugs. How do you develop a diet that is good for you? Here are some suggestions:

A. Do your Homework

Here is a selection of diet books that you will find helpful. The first four books contain information on the relationship between diet and the immune system. The fifth book is one of the better books around on vegetarianism. It suggests an alternative approach to diet that many people are embracing.

Coping With Prednisone, Eugenia Zuckerman and Julie R. Ingelfinger, M.D., St. Martin’s Press, 1997, Chapter 6

Spontaneous Healing, Andrew Weil, M.D., Ballantine Books, 1995, Chapter 9

The Immune Support Cookbook, Mary Hale and Chris Miller, A Birch Lane Press Book, 1995

Eat Right 4 Your Type, Peter J. D’Adamo, N.D., G.P. Putnam’s Sons, 1996

Becoming Vegetarian, The Complete Guide to Adopting a Healthy Vegetarian Diet, Vesanto Melino, R.D., Brenda Davis, R.D., Victoria Harrison, R.D., Macmillan Canada, 1994

B. Keep a Diary of Your Food Consumption

After doing your reading and making whatever diet changes you feel are appropriate for you, keep a complete one week diary of your food and beverage consumption, including portion sizes.

C. Meet with your Doctor and a Dietitian

Many doctors are not that well informed about the precise properties of various foods. While dietitians are well versed in this area, they are not doctors and are not likely to be knowledgeable about your illness or the drugs you are taking. Therefore, you need input from both sources. Set up a meeting with your doctor and a professional dietitian. Based on your:

(a) age

(b) sex

(c) weight

(d) current state of health

(e) drug consumption

(f) current diet

ask your doctor and dietician to critique your current diet and make recommendations that will address the issues outlined above.

Maintaining a consistent exercise plan can be challenge for many PV patients. The illness can be both physically and mentally draining. The drugs can make one lethargic and deplete important minerals such as calcium. The loss of calcium can make one’s bones more brittle and leave one susceptible to bone fractures. Taking Prednisone without an exercise program, can result in weight gain and weaken your bones. A good exercise program can result in stronger bones, limit weight gain, contribute to mental and physical well being, and increase stamina. On the other hand, a bad exercise program can endanger your health by placing your brittle bones at risk. What should you do? Again, based on the same set of items listed in the diet section, and the results of your most recent bone density test, develop an exercise program in concert with your doctor and a professional fitness instructor, that is custom designed for your needs and capabilities.

16.(a) How many PV patients have you treated? _________

(b) What has been your success ratio in bringing this disease into remission? _______________

17. If you are unsuccessful in bringing my PV under control, what treatment would you recommend next and why?

________________________________________________________________________________________________________________________________________________________

There are organizations that can provide you with very useful information, and with emotional support. While the names below are listed for your benefit, to create awareness of their existence, within the medical community, you may wish to ask your doctor these questions:

18. Are you aware of the National Pemphigus Foundation? Yes _____ No _______

19. Are you aware of the Quarterly Pemphigus Foundation Newsletter? Yes ___ No _____

20. Are you aware of the Pemphigus Support Group on the Internet? Yes ___ No ___

21. Is there a local PV support group in the area? Yes ____ No ____

If no go to 23.

22. How do I join? _____________________________________________________________

23. Do you have other PV patients who might wish to participate in a local PV Support Group?

Yes ______ No ______

If yes, can you put them in contact with me? Yes ____ No _____