Pemphigus Vulgaris FAQ
(Frequently Asked Questions)
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).
Farewell to Susan.
Our dear friend Susan had passed away on August 8, 2002.
For years, Susan shared her great knowledge and kindness with
all of us, both on pemphigus mailing list, and on her Q&A
and You". Her informal and personal approach to
guidance and sharing helped many hundreds of Pemphigus patients
worldwide. We miss you Susan.
The following is Susan's
obituary. My sincere sympathy for to her husband Barry
and her family.
Many thanks to Dan Goodwill for contributing PV
Yesterday I was told I have Pemphigus Vulgaris. What is it?
What causes Pemphigus Vulgaris?
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,
stress, and even certain foods (more about food).
I was told to take Prednisone. Isn't it a dangerous drag?
Prednisone and other immunosuppressants are usually given to Pemphigus
Is St. John's Wort (hypericum) effective against prednisone induced
"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
with other prescription medicines, including Cyclosporine,
which is often used to treat Pemphigus.
I only have one lesion on my back. Does this justify prednisone treatment,
and its possible side-effects?
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.
I tried to reduce prednisone dosage from 20mg to 15mg, but suffered
from (you name it) side effects. Any ideas?
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
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.
I was told that DHEA helps Lupus patients. What about Pemphigus Vulgaris?
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.
Somebody sent me a letter where he says that Cat's Claw herb will cure
me. Should I believe?
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
of Psoriasis being aggravated by Cat's Claw.
Are there any alternative treatments to Pemphigus Vulgaris?
The same applies to Echinacea and other wonder remedies which are supposed
to boost our immune systems.
Which USENET newsgroups may contain postings about Pemphigus?
Which mailing lists may be interesting to Pemphigus Vulgaris patients?
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
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.
"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"!!!
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
Should I refrain from drinking coffee?
- There is a mailing lists for Pemphigus patients and their families,
sponsored by National Pemphigus Foundation. To subscribe, send blank
message to email@example.com.
This is a high-volume, unmoderated list. It is extremely helpful
for new patients; somewhat less as one is getting more experienced.
Some people believe that caffeine contributes
to bone loss, but the evidence is weak.
Where can I chat (irc) with other Pemphigus patients?
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.
Where I can get more information about Pemphigus Vulgaris?
Janet Segal publishes an excellent
newsletter to provide information to Pemphigus patients.
Steve Shapiro has a web
dedicated to PV and Steve's views on health. A
must for everybody interested in Pemphigus.
about pulse treatment by one of the leading researchers in the field. Contains
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
Other autoimmune links (not specific to Pemphigus Vulgaris)