Anyone treated for Bullous Pempigoid?

Posted by anc50 @anc50, Nov 27, 2025

I developed red itchy raised bumps in different parts of my body. One became a blister, healed and then returned so I saw a dermatologist who has prescribed Prednisone. I am very sensitive to pharmaceutical drugs which I metabolize quickly and get unpleasant side effects. Starting on 20 mg was way too much. Dose was reduced to 10 mg and itching reduced. I finished the short course. Waited a week and got a flu shot. Then was exposed to an emotional shocking situation and itching & bumps spread. Now on 5 days of 10 mg and then reducing to 5 mg. I am concerned about the effect on my Hashimotos, Intersticial cystitis, chronic constipation caused by medical trauma from past childbirth causing tears & nerve damage in rectal wall and now have bladder and uterine prolapses and a rectocele all of which make moving stool out difficult. I also live with chronic pain caused by a dental injury to my jaw joint making it impossible to chew on one side of my mouth. I eat a soft diet of puréed vegetables & other easy to eat foods. Many doctors have damaged me and only a small number have helped. For reference I am 75.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

pwarner | @pwarner | Aug 23 11:10am

In reply to @garf1 "It took 2-3 months for Dupixent to become fully effective for me. Hang in there with..." + (show)

@garf1 he has been on it for a little over 3 months and nothing changed. Still getting blisters like crazy. He is also on prednisone. I’m sorry, but for the cost of this med it isn’t worth it. I even called Dupixent and got no answers. I am at the point where I think they are using people as experiments. I’m very happy for you if it is working for you.

ggdiagedu | @ggdiagedu | Aug 23 8:33pm

In reply to @pwarner "My husband has been treated for bullous pempigoid for 7 weeks. He was diagnosed with a..." + (show)

Dermatogist wanted to put me on this Biologic; however, I refused because of price; in procoss of retiring and getting Medicare plus Dermatogist had diagnosed my condition as SCLE over a year ago. In process of getting new referral for a dermatogist gor second opinion. So frustrating.

pwarner | @pwarner | Aug 24 7:51am

In reply to @ggdiagedu "Dermatogist wanted to put me on this Biologic; however, I refused because of price; in procoss..." + (show)

@ggdiagedu All I can comment on is what we’ve gone through. It is very expensive and the company couldn’t even give me any kind of time line to be able to see some kind of improvement. His dermatologist wouldn’t even consider trying something else. We saw another dermatologist this week. He’s trying another drug. This is an awful disease and my heart goes out to you.

pwarner | @pwarner | Aug 24 7:54am

In reply to @hlfranc "I recommend finding a doctor that specializes in treating this disease, ideally a blistering disease clinic...." + (show)

@hlfranc Unfortunately in Dover the dermatologists don’t treat it. I didn’t realize they could pick what they treat..

pwarner | @pwarner | Aug 24 7:58am

In reply to @pdlane35 "After nearly 5 years on and off medrol the bullis prevails. Stress causes flaring; IVIG infusion..." + (show)

@pdlane35 Have you tried Cell Cept?

pdlane35 | @pdlane35 | Aug 24 8:56am

Don’t know what that is.
Am gradually tapering off Medrol. Hoping to avoid a flare. Notice that in times of stress the bumps reappear.

ggdiagedu | @ggdiagedu | Aug 24 12:56pm

In reply to @pwarner "@ggdiagedu All I can comment on is what we’ve gone through. It is very expensive and..." + (show)

Yelp, a nightmare, but I'm keeping the faith; I have been dealing with this for over 2 years; I had first flareup in 2024 (blistering last about 3 months) and then again this past April and I have been dealing with blistering all summer; finally, retired to focus on my health; one specialist in Dermatolgist's office on my initial visit two years ago said it was SCLE; they put me on topicals; Triamcinolone Acetonide, Tacrolimus and Mupirocin; and recommened I order Niacinamide tablets off Amazon things cleared up and I was able to get through another school year; however, this Apr I had another flareup a few weeks before end of school and a doctor in the office said I had a unique case; ran BP 180/ BP280 blood work and tried to push it Dupixent on me, however I did not like the price, needles or side effects; especially when they are flip flopping on what the diagnosis is; even after doing a blood test for BP and a biopsy for SCLE. The VA ran a few lupus test for me as well but basically said I do not have lupus; however there were Titers but not high enoug or whatever to run further tests; however, today, I am sitting at home with week old rashes on neck and hands that look like lupus to me; and I all of a sudden very sensitive to the sun; anyway, I have appointment on 3 Sep to get new Referral to a new Dermatologist; the VA can't get me in until Jan 27 to see a Dermatologist; so, now that I am retired, I will go thru Medicare; we will see how that goes; stayed with my PCA Nurse from my work insurance; so she has been with me since all of this started and she undertands I need a new Referral for a second opinion.

ggdiagedu | @ggdiagedu | Aug 24 12:58pm

In reply to @pwarner "@pdlane35 Have you tried Cell Cept?" + (show)

What is Cell Cept?

hlfranc | @hlfranc | Aug 24 1:08pm

In reply to @ggdiagedu "What is Cell Cept?" + (show)

@ggdiagedu It suppresses the immune system. They tried it on me, but my blood work went bad, lymphocytes went too low.

hlfranc | @hlfranc | Aug 24 1:16pm

In reply to @pwarner "@hlfranc Unfortunately in Dover the dermatologists don’t treat it. I didn’t realize they could pick what..." + (show)

@pwarner For me, they focused on the symptoms and the cause. The cause was the hardest since it's your immune system and they need to get it under control . Keep in mind that this is a rare disease so research continues. Best wishes.