Pemphigus Support Group

I am looking forward to the day that I can say the same. I know it is going to happen and I am not taking no for an answer. I live in light of this fact. If I thought for a second that I was not going to go into remission I probably would give up on this fight. I don't care how long it takes I will fight until it happens.

Good for you. No one knows exactly what causes pemphigus, or what determines how and when remissions occur, but some cases have been known to burn out after a few years of treatment with prednisone and immune system suppressants. You probably know that, and have already experienced some of the side effects of prednisone. I am trying very hard to make the case for vitamin and mineral supplements to replace those nutrients that are depleted by prednisone. Most doctors recognize that calcium and vitamin D are depleted by prednisone, and prescribe or suggest taking calcium/D tabs to offset that effect, but not having been trained in biochemistry or nutrition, not many physicians realize that a handful of other nutrients are depleted as well. The loss of zinc, for example, can cause major mental dysfunctioning, impair the healing process, and create feelings of anxiety, depression, and mental confusion...exactly like the side effects of prednisone. Replacing zinc should be as important as replacing calcium. For more information, you can go to www.pemphinremission.com/nutritio.htm

Let me know what other supplements you are taking

I'm not taking any of the supplements I took when I was on prednisone, but most of the nutrients it depletes can be found in stresstabs with zinc, available over the counter in pharmacies and healthfood stores. Most stresstabs don't contain calcium or vitamin D, both of which are also depleted by prednisone, but calcium/D tabs are also available OTC. After a lot of trial and error, I used to take one of each when I had pemphigus, and I also believe it was this combination that lead me into remission. www.pemphinremission.com/nutritio.htm

How long after you were diagnosed did you go into remission? How bad did the disease get before you went into remission?

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Sorry, I hit the send button by mistake. I started to say that I came down with my first symptoms in November, 1994, and went into remission in January, 1998, although I had a brief flare-p in February before going into complete remission. Throughout the whole 3 years or so, I had constant pain in my mouth, and all of the side effects from the drugs....joint aches, physical exhaustion, dizziness, nausea, etc., ...but my case was not as severe as some that I have heard about. I was lucky to have very knowledgeable doctors who knew how to treat pemphigus, and an RN pain specialist who knew how to keep that under control. I would encourage you to join our discussion group. It's easy. Just send a blank e-mail (no subject, no text) to discussion-on@pemphigus.org. You'll meet an amazing bunch of people, most of whom have or had pemphigus, and they can better guide you through their experience.