Pemphigus Support Group

Especially with PF?Thanks,Heron

Hi everyone,I got one dx was put on Clobetesol got worse...went to derm started elidel kept gettting worse. She said don't put anything on my face and yest I could go outside for a walk. So w/ no sunblock I continued to walk outside maybe thats why I got worse. Started Triamcinilone and after a week or so started getting better. Punch biopsy: "We think it is SLE....its either that or...

I have been taking Cellcept for my pemphigus vulgaris for about 3 months. I found out I had this condition 3 months ago and my doctor put me on Cellcept and I get steroid shots every other week.My condition has been limited to inside my mouth, along the gum line, under my tounge, on my tounge, inside my cheeks, and in my throat.I am better now, but still have a long way to go. I have my ups and...

hi im john im 31. i just got diagnosed a few days ago after suffering with it for months. initially i was in icu with hundreds of lesions in my mouth, throat and all over my body. they have it partially controlled with steroids but its still very present. im only on 30 mlg a day which from reading others comments isnt enough. im still waiting to see what other treatments will be added. i guess i...

The day I got a diffinitive diagnosis of Bullous Pemphigoid a CT scan showed a mass in both lungs and a positive (proven by biopsy) node in my axilla.. Oncology appts pending. Anyone with similar experience? Hand blisters very problematic. Bleeding and sticking to everything, especially dressings.Anyone find anything to aid healing?

Tell us about your personal experience with Clobetasol as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?

I have just been diagnosed with Pemphigus. I don't know what to expect. I see my doctor on Friday for the first time. I am always tired. Is this a symptom of the disease? I also have a hard time sleeping. Let me know what I can expect.

Tell us about your personal experience with Prednisone as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?

Hello all. Am wondering if anyone can shed some light on an issue for me. Am new to the whole Pemphigus thing (just diagnosed last summer and have had 3 outbreaks now, blisters on the roof of my mouth (can't eat, even water hurts) and I am sure from reading things its why I am so tired etc., however, I would really like to know if anyone else gets flu like symptoms when they get a breakout. All...

Because of the inability to get me into remission after a year of treatment, my doctor is considering Rituximab treatments. Does anyone have experience with this?

I hope you don't mind me posting on this site, I just wondered if anyone could offer any advice.I am a complementary practitioner working with animals. I have recently been asked to see a horse that is suffering from Pemphigus - just been diagnosed.The vet has prescribed prednisone for her which I think is helping although she has only been on it for a week. I have been asked if there is...

Just a note of encouragement: pemphigus does NOT have to be a lifelong illness, despite some of the things you may have read or heard. There are different ways to treat it, almost all of which include prednisone, but there are also long-term remissions that defy the notion that it is a permanent affliction. In my own case, my "remission" has lasted 11 years, long enough for me to consider myself...

Is there anyone out there that has pemphigoid?i need to chat with someone that has this disease.I have been suffering since 2002 and have tried many meds without sucess.waiting to here Susan

Recently I've been trying to find a good support group for pemphigus in my area but since it's so rare it's been hard to find one. So I was really happy to finally locate this forum, it's really weird trying to explain it to other people but I can understand since I never heard of it before now. It's nice to know I'm not alone battling this thing though.

Pemphigus is also considered a nerve disorder I think that this neuropathy site will help you with resources and links and how others have dealt with similar issues . There are new topics everyday - a lot of research goes into the Neuropathyteam posts which provides many resources and links. Thought we could help.. http://dailystrength.org/groups/neuropathy