Anyone treated for Bullous Pempigoid?

God bless you for being here which can only mean that you’re not done yet, but seriously you have certainly suffered very badly over the years. With due respect I was drawn to your post by the unusual name of your ailments, the rash almost sounded like shingles but I realize what you have is quite different. I know as a woman myself that we are designed to have babies but honestly the damage for yourself and others is profound. I sincerely wish you healing and peace with yourself, I’m 74 so I understand how hard this is at our age, I shall say a prayer for you, be safe.

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.

I’m so sorry to read of your medical history, as I am not a physician I can’t make any recommendations, just tell you about my own course with Bullous Pemphigoid (BP). First off, I had a biopsy to confirm BP, I’m told this is required. Initial course of prednisone 10mg/day that stopped horrible itching and cleared skin. Dupixent injectable was recently approved for use on BP, can be hard to get insurance approved but did after one appeal. I’ve been on for six weeks and now weaning off steroids. I’m fortunate that this all seems to be working. Dermatologist says that age is the primary risk factor. I’m 75. Hope this helps.

@frouke
Thank you for your kind reply. I appreciate prayers. What I also need is a doctor who is honest, skilled and a kind listener. I like my dermatologist and acupuncturist. We’ll see about skilled.

@garf1
Thank you for answering my post. Good that you found a solution to BP for you. I’ll consider asking and researching Dupixent. My history with drugs has been poor as I usually get awful side effects. I realize this is a “biologic”. How does that make it any better? I am exhausted from the “let’s see if this works” approach.

@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.

@anc50
Thank you for the information. I will be seeing people this coming week and I am putting a list on my phone so I don’t leave my list at home
Unless a person has something like this you don’t understand the pain and discomfort it causes.
Thank you for the information.

@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.

@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.

@minnesota10
I will ask more questions as I’ve been taking notes.
Thank you for the information.
It is so hard to anything.
Have a great New Year.