The stories on
this site were written by people who have
experienced a rare autoimmune disease known as
Pemphigus, and are now in remission. In some
cases, the period of remission would suggest that
once recovered, there is hope that the disease
may never return again. Although the causes of
pemphigus remain a mystery, a study conducted by Dr.
Jean-Claude Bystryn, M.D., concluded that "Remissions were found to be much
more common than previously reported."(1) These stories are only
a handful of the many that could be told, but
they provide a glimpse into the experience of
having pemphigus, and the hope of remission.
Stories
Skip: "I was diagnosed with pemphigus
vulgaris in 1994, and went into remission in
January, 1998, and have not had any symptoms
since then. Being in remission for so many years
is a story I felt needed to be told, and one that
I hope will be inspiring to others." Skip's Story
Ron: "...soon after, I started seeing
results, my skin actually was healing and ( I )
started dropping my prednisone and then the
cellcept. I am now medication free for over a
year but I still take the vitamins
everyday." Ron's Story
Lisa:
Lisa's story appears in diary form. It is a very
interesting account of her experience with
pemphigus, and the road she took to remission.
There is a similarity between Lisa's story, and
Ron and Skip's: in all three cases, they had
supplemented their diet with calcium/D tabs and
multi-vitamins or stresstabs, high in zinc. Lisa's Story
Yvette: Yvette's story begins about 11 years
ago. Today she writes, "Psychologically, I
feel very much like I am in remission. And to me,
that is no small thing....I have learned to
understand that it is important to be vigilant
and make every effort to understand the ways we
are able to help ourselves. In tandem with the
medical profession I believe that makes a very
powerful team." Yvette's Story
Robert: "I
was diagnosed with mild pemphigus vulgaris in
2005. I had a red rash that turned into small
lesions on my chest, back, and genitals; my
tongue was swollen and painful with severe
mapping....6/5/2008 The P.V. is in remission and
I feel great. I still have a little Psoriasis on
my leg …." Robert's Story
Sally: "I think using supplements can be very
wonderful and if it works for some, then that is
great. I don't think, however, it's always enough
for everyone. And, I think with this disease, the
treatment and journey is different for us
all." Sally's Story
Beth: "I have PV & have been in
remission since 2003 after battling active
lesions for 10 months....In August 2003 my PV
specialist told me that I no longer had
active lesions and would not have to return
unless I had another flare." Beth's Story
Roger: "I
haven't had a blister on my body or scalp in 3
years. I see my Dermatologist every six months
and I am still the only patient he has with
Pemphigus." Roger's Story
June: "I have been in remission the last year
and a half, or two years, thank goodness. Am now
pemphigus-free! Hallelujah!" June's Story
Paula: "It
has now been almost two years since I entered
full remission, no drugs, no disease. At times my
mind wanders back to the difficult days on
steroids, letting some fear return to haunt me.
But...I’m so very glad to be alive and
experiencing fairly normal health again." Paula's
Story
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Helpful Links to Understanding
Pemphigus
What
is Pemphigus?
Pemphigus is a
rare skin disorder that strikes between 1 and 4
people for every 100,000 worldwide. It begins as
a blister, and can start in the mouth, the eyes,
any surface of the skin or mucous membranes, or a
combination of these areas. It can be painful,
uncomfortable, and life-threatening, if left
untreated. Because the disease is so rare, the
first signs of pemphigus are often confused with
other, less serious diseases, and treated
ineffectively. Many doctors have never seen a
case of pemphigus. Those who recognize the
symptoms, and understand the severity of the
disease, usually refer their patients to a
specialist in Dermatology.
Treatment
Pemphigus has been
successlly treated using a variety of approaches
designed to suppress the immune system. More
often than not, the treatment involves the use of
drugs, such as prednisone, which can cause
adverse side effects, and deplete the body of
specific nutrients essential to good health. For
more information on offsetting this effect, click
on the link below for Nutritional Support.
If you suspect
that you have pemphigus or pemphigoid, it is
important to see a qualified dermatologist as
soon as possible. You can find more information,
referrals, and support, at the web site for the International Pemphigus
and Pemphigoid Foundation (IPPF).
E-mail
Discussion Group
The IPPF sponsors
an e-mail discussion group where patients and
caregivers exchange information, stories, and
support. It is a great way to meet other people
with pemphigus, and to learn more about this
disease and the different types of treatments
that are available. For information on how to
join the group, Click Here.
How
You Can Help
The
IPPF is collecting data on individual cases of
pemphigus to correlate information and treatment
methods that will help current and future
patients. Please join their effort by registering
in the Health Management Program by clicking Here.
Theory
of Pemphigus and Remission
There is evidence
to suggest that pemphigus is the result of aging
and the diminished function of the thymus gland,
which regulates the immune system. Research has
shown that the mineral zinc may play an important
role in restoring the thymus and, in the case of
pemhigus, lead to remission. Click Here.
Theory of Pemphigus
and Remission: The connection between
the thymus gland, the immune system, and a
possible road to remission.
Nutritional Support: While not intended to
replace conventional forms of treatment for
pemphigus, there are several important nutrients
that should be considered to replace the
deficiencies caused by prednisone, and also as a
possible means of improving the chances for
recovery.
Diet and Low Blood Sugar The
low blood sugar diet might also be helpful as a
means of controlling blood sugar levels while on
prednisone. The theory behind avoiding refined
sugars, such as candy, cakes, ice cream, etc., in
favor of more complex carbohydrates found in
fresh fruits and vegetables, is that with a more
complex carbohydrate, the release of glucose into
the bloodstream is not so sudden as to cause an
insulin reaction.
International
Pemphigus and Pemphigoid Foundation: The International Pemphigus and
Pemphigoid Foundation (IPPF) is the best resource
available on the web for information about
pemphigus. It is the first place to go for a
comprehensive picture of what pemphigus is, how
it is treated, and where to look for help. It is
also a great source of support, and offers
several options which allow those with pemphigus,
and those who care for someone with pemphigus, to
e-mail information and share their personal
experiences with one another as members of an
online discussion group. There is also a forum
available and an archive of past messages, as
well as other helpful links, at the IPPF site.
Pemphigus in Remission