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Anyone treated for Bullous Pempigoid?
Autoimmune Diseases | Last Active: Nov 30 6:25pm | Replies (12)Comment receiving replies
I am sure you are in a lot of pain. I am dealing with something close to what you have.
Biopsy show hives but it is not getting much better. Some are small rash and then some a bit larger.
They tell you not to itch it but I have too at times, as it will feel like it is on fire. If I don’t itch it, it get worse like burning. I can’t get hot it makes it worse.
One doctor said we will try different meds until one works. This started around May 1.
I am 76.
Replies to "I am sure you are in a lot of pain. I am dealing with something close..."
@minnesota10
Dear Sir or Madam, two years ago, at age 74, I was diagnosed with Boullous Pemphigoid. The diagnostic process took several weeks during which time some professional minimized the itch and agony I suffered. Thus, I am sympathetic to yours. My diagnosis was finally achieve with a punch biopsy. Since then, I have been on Dupixent which has been relatively successful in relieving the symptoms. I still have some itching and occasional blistering on my scalp, the site of the original diagnosis. I strongly encourage you as a guide to go to ChatGPT. There I found a better description of my symptoms and treatment than I was getting from any healthcare professional. I have used it as a guide for conversations with my dermatologist. You might see, for example, sequence for diagnosis:🧬 Recommended next diagnostic steps
Skin biopsy with immunofluorescence (preferably of an early blister and adjacent normal skin) — to evaluate for bullous pemphigoid or lichenoid dermatitis.
Bacterial culture of any oozing site to rule out secondary infection.
Dermatopathology review of prior Grover’s biopsy slides — to confirm or refute that diagnosis.
Autoantibody panel (BP180/BP230 ELISA) — to check for pemphigoid antibodies.
Comprehensive medication review — some drugs can exacerbate autoimmune blistering reactions.
My BP was an auto immune reaction to Nuvolimab which I took to combat metastatic melanoma. It was a successful treatment, but it was two months later that the BP occurred. I am told that I will likely be on Dupixent for the remainder of my life.
I wish you the best.
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@minnesota10
I had blood drawn for an auto immune panel that showed I had Bullous Pemphigoid. Perhaps you can ask for more information to get the right treatment. I wish you comfort and peace as you take this journey. Obviously the health care system is flawed. Advocating for yourself is important so ask a lot of questions. . Hang in there. We won’t be on this planet forever. We might as well try to enjoy the ride as much as possible.