Pemphigus Vulgaris FAQ

Pemphigus Vulgaris is a rare auto-immune disease of skin. This is an informational page for the patients and their families and it contains links which they may find useful. It does not contain medical advice.

NEW: I am online with Yahoo messenger as pemphigus_faq.

This page was last updated on August 12, 2002 by Victor (victorlei at yahoo dot com).

Many thanks to Dan Goodwill for contributing PV patient checklist.

Yesterday I was told I have Pemphigus Vulgaris. What is it?

If you are new to Pemphigus Vulgaris, here is a good introductory article by TJ Moriarty: Pemphigus Vulgaris: A Diagnostic Chameleon?

Nobody knows. It is known that Pemphigus Vulgaris is not contagious. There is a research which shows that there is a genetic predisposition to Pemphigus Vulgaris, but we can only guess what aggravates the flares of the disease. In medical journals we find case histories of outbreaks being triggered by radiation, surgery, medications, emotional stress, and even certain foods (more about food).

Prednisone and other immunosuppressants are usually given to Pemphigus Vulgaris patients.

"Coping with Prednisone" by Eugenia Zukerman and Julie Ingelfinger is a must for every Pemphigus patient, and for their families. You can get it in any large bookstore, or by mail order from Amazon or Barnes and Noble world-wide.

Depression is one of the most popular side-effects of prednisone. It is less obvious than other side-effects, and very often is not reported and not treated. Depression may endanger your life, and should be taken very seriously. Some people reported in private correspondence that hypericum in conjunction with Kava-kava root helped them. Warning: (Thanks to SM and EL) Though the combination of hypericum and prednisone seems to be safe and effective, hypericum may interact with other prescription medicines, including Cyclosporine, which is often used to treat Pemphigus.

Pemphigus is a progressive disease: if left untreated, lesions are likely to spread all over your body. As the disease progresses, you will need larger dosages to achieve remission.

It seems that an agressive treatment which achieves remission is a better long-term strategy than a mild treatment which only brings some improvement, without achieving full remission. (Usual disclaimers apply: I am not a doctor, this is not a medical advice, I have no factual data to support my views)

Try using 1mg tablets instead of 5mg ones. Go down very slowly -- our bodies don't like quick changes in prednisone levell. Going down 1mg a month worked for some patients. Your mileage may vary.

DHEA has been shown to be benefitial to Lupus (other serious autoimmune disease) and HIV patients, and there is a speculation that it may help Pemphigus Vulgaris patients, too. (More about connection between DHEA and immune system). I am collecting patient experiences with DHEA: please write me if you are taking it or took it in the past.

Cat's Claw (Uno de Gato) is (was?) aggressively marketed by various MLM (Multi Level Marketing) companies, as being benefitial to immune system disorders. Some people claim that they treated Pemphigus Vulgaris patients with good results. When I tried to collect actual patient experiences of using Cat's Claw, I could not find a single Pemphigus Vulgaris patient who was cured by this herb. Several people reported that Cat's Claw helped them with other problems. Nobody reported being cured of a serious auto-immune disease: Lupus, Rheumatic Arthritis or Multiple Sclerosis. There is also a report of Psoriasis being aggravated by Cat's Claw.

The same applies to Echinacea and other wonder remedies which are supposed to boost our immune systems.

• There are two published cases of successful treatment with Chinese herbs (Here is one reference). Personally, I had bad experience with using Traditional Chinese Medicine, but see what Misti McDaniel wrote about her experiences.
• One person reported a success with homeopathic treatment in private correspondence.
• One person reported a success with apples.
I don't know of other success stories. I am still looking for Pemphigus Vulgaris patients who used homeopathy. If you had either bad or good experiences with homeopathy please tell me. This is what a very experienced homeopath wrote me:

"Classically, homeopathic treatment does not go well with prednisone, but we had seen it working even under prednisone".

"You can't afford to get off prednisone without endangering your life, or at least your well being. I just had seen a guy with pemphigus who tried to get off prednisone, ended up with almost no skin and IV cytoxan and cortisone and over a month in hospital".

"Because of these, I only can advice you not to go to homeopath, unless he is a physician as well. Because those that have no medical background may demand you to get off prednisone, NEVER OBEY THAT"!!!

There is no newsgroup dedicated to Pemphigus. Sometimes, Pemphigus related postings appear in sci.med.immunology, bionet.immunology, alt.support.skin-diseases.

• There is a mailing lists for Pemphigus patients and their families, sponsored by National Pemphigus Foundation. To subscribe, send blank message to discussion-on@pemphigus.org. This is a high-volume, unmoderated list. It is extremely helpful for new patients; somewhat less as one is getting more experienced.

• 2003/09/02: Pemphigus and Pemphigoid Society has now web based forums. Subscribe and enjoy!

• There is an osteoporosis support list. Though osteoporosis is not inevitable (some people take Prednisone for thirty years and have no signs of osteoporosis), it is a common side effect of Prednisone therapy. Taking some prevention steps and monitoring your condition is important.

  To subscribe, send a message to listserv@acor.org with the following line in the body of the message:

  subscribe osteo-p Your Name
  Even if you don't have osteoporosis, it is important to read osteoporosis home page and do bone density scan for future reference. (Another good osteoporosis page.)

Some people believe that caffeine contributes to bone loss, but the evidence is weak.

There are no regular chats which I am aware of. However, if you have Yahoo messenger, you can talk to me (pemphigus_faq) when I am online.

• A sample of treatment strategies from University of California Davis. Your dermatologist may be interested to read this page, too.
• Janet Segal publishes an excellent newsletter to provide information to Pemphigus patients.
• National Pemphigus Foundation homepage.

• 2003/09/02: Pemphigus and Pemphigoid Society

• Steve Shapiro has a web site dedicated to PV and Steve's views on health. A must for everybody interested in Pemphigus.
• An article about pulse treatment by one of the leading researchers in the field. Contains bibliography.
• Another article on pulse therapy, this time using on dexamethazone-cyclophosphamide combination. Contains nice bibliography, too.
• Search engines bring a lot of web pages, but they are mostly of interest to the medical students and maybe researchers. Searching medline is much more interesting. There are at least two companies which provide medline search free of charge: Avicenna and Healthgate.
• Interpretation of test results.
• Other autoimmune links (not specific to Pemphigus Vulgaris)
Immunologic Diseases links.