Pemphigus Support Group

Pemphigus is an autoimmune disorder that causes blistering and raw sores on skin and mucous membranes. As with other autoimmune disorders, it is caused when the body's defenses mistake its own tissues as foreign, and attack the cells. There are three types of pemphigus which vary in severity: pemphigus vulgaris, pemphigus foliaceus, and paraneoplastic pemphigus.

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  • Scared2

    Question

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    Just been diagnosed by dentist with pemphigus or pemphigoid decease. I reside in Miami area. Anybody can recommend doctor.Should it be treated by dermotologist or by dentist?Thanks
  • adool

    Any support Group

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    Hi everybody,Im international student at University of South Florida “ Tampa” I have Pemphigus disease since 2015. Now Im taking celcept 500 Grm two time every day. I was wondering if their any support group in Florida or Tampa to support each other. ? 
  • Ggirl

    Hi scared2

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    I'm sorry to find out about yet another case of what's supposed to be a rare disease. I was recently diagnosed myself (November). I was seeing a guy in Broward county but after second opinion (long story) I switched to Dr Fransisco kerdel in Miami. I've only seen him once. In fact I see him again tomorrow. So far he has been attentive and appears knowledgeable. He was referred to me as the...
  • heron2

    Is Anyone Here?

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    Especially with PF?Thanks,Heron
  • heron2

    My fourth DX: "Pemphigus"

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    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...
  • deleted_user

    Any thoughts on Cellcept?

    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...
  • deleted_user

    just diagnosed

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    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...
  • deleted_user

    Cancer related to pemphigus

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    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?
  • AdminTeamDS

    Clobetasol for Pemphigus

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

    just got the test results

    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.
  • AdminTeamDS

    Prednisone for Pemphigus

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

    Outbreak and flu symtoms

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    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...
  • deleted_user

    Rituximab

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    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?
  • deleted_user

    pemphigus/Horses

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    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...
  • deleted_user

    Remissions

    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...