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Anyone treated for Bullous Pempigoid?

Autoimmune Diseases | Last Active: Nov 30 6:25pm | Replies (12)

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@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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Replies to "@minnesota10 Dear Sir or Madam, two years ago, at age 74, I was diagnosed with Boullous..."

@ricknorth Thank you for your kind and thorough response. My dermatologist has taken these same steps for diagnosis. Not only that but my doc gave me a personal cell number to keep up with my progress. We have a long relationship. Although this is a new diagnosis I am hoping to be able to get it under control. My genetic assay from years back indicates that I metabolize drugs quickly and so I often get unpleasant side effects. There is long list over the years of drugs that have failed me. For this reason I have been offered an injection of cortisone to bypass my liver. Dupixent has not been suggested yet. I am taking it a day at a time. I do appreciate your sharing your experience. I am trying to keep an open mind.