Pemphigus in Remission: stories of hope for pemphigus and pemphigoid patients

Pemphigus in Remission

Stories of Hope for Pemphigus and Pemphigoid Patients

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.

Our 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

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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).

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.

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.

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.

E-mail: If you have a story about your own remission, or would like to comment on Pemphigus in Remission, you can write to skipvanlenten@optonline.net.