Bullous pemphigoid

Hi pmpleak - A few years ago I had a skin outbreak that looked and behaved exactly like BP - the large, spreading, weepy bumps that leave the skin raw and painful... It was horrible and my dermatologist was sure that it was BP. When the biopsy came back negative for BP, she was so surprised that she ordered some blood tests specifically for BP and they, too, were negative. She did keep me on doxycycline for a while, while my arm (primary site) was raw and looking like I should be living in a leper colony. I still wonder what the heck it was if it wasn't really BP. It did finally resolve, but it led to a Dx of atopic dermatitis (eczema) and I am on Dupixent. I can tell you for sure that with all the various ways eczema can look, it never looks like that initial outbreak I had.

So while I was not diagnosed with BP, I certainly understand the misery you've experienced. I could attach a photo series showing how the lesions developed and got worse, but I fear it would gross people out too much!

The usual starting treatment for BP considers topical steroid and often prednisone for control. Doxycline works in milder disease.
Dupixent has shown very good response and biologic treatment avoids
steroids side effects.

@jacqincalifornia thank you for reaching out. I am actually waiting on a biopsy to confirm and also the blood work. I live in rural northern mi and it's a drive to get most places. I was too swollen and miserable to get into blood lab yet. Wow, I will be curious to see what it comes back as. Yes, the leg blisters were so horrid and painful and i also had a lot of tiny blisters between my fingers, toes, on my arms and shoulders. the itch was unreal. I too felt like a leper, looked like one too. I sure hope you're doing better now. I think I'm at the endish of things just terrified it could come back. Take care and when I get my labs in I'll poke back in here.

@seniormed Sadly I had to start with my Dr. and not a Dermatologist. I love my Doc, they just really had no clue about this disease and apparently it's very rare. I live in rural northern MI and trying to get established with a derm takes time. So, in the begining my doc did research and put me on prednisone. The problem was, it was not strong enough of a dose. I ended up gaining probably 20 pounds or more in water weight. That brought on all kinds of misery. I was put on water pills and then landed in hospital because I had lost too much of my salt. After that, hospital got me into a derm office where I started new treatment. A much stronger dose of steroid as well as dupixen shots. This all began at the first of March. Finally April 18, I believe I'm going to be at the end of this soon. Just a super scary ordeal. One thing I'm not sure on is the dupixent and how thats supposed to help. Thank you for reaching out, be well.

Greetings. I'm a retired dentist, 72, diagnosed with Bullous Pemphigoid. Have been on Dapsone,200mg/day, for 2+ years. The skin lesions have cleared with only an infrequent mild recurrence. The intraoral lesions are worse and more difficult to deal with. I personally think I have Pemphigus Vulgaris but that argument continues. Got my dermatologist to biopsy a skin lesions that popped the day of my regular skin appointment and that's how we got the diagnosis. The mouth lesions have been awful and I've tried everything but honesty DMSO used as a rinse has controlled it better than anything. I've been discussing Retuximab but getting it scheduled in the medical/political environment locally is a nightmare.

@glongdmd Oh how terrible that sounds. I was and am still terrified of this thing entering in my mouth. I can't even imagine. I'm very sorry you have to go through this. I wonder why your dr. isnt agreeing with the vulgaris. It sure sounds like what i researched. Also not sure what is a DMSO rinse your speaking of? I'd like to know just in case. Also Retuximad? I've not heard of this before. Did your dr think it was your Dapsone that triggered this? I have been on Lisinapril for years but not sure if that's a trigger. It's a blood pressure med. At any rate I wish you better days and I really appreciate your imput. This has been the worst illness I have ever been through. it helps to know that others know just what I'm talking about. Just to add, I know there are way worse diseases out there and so many cancers. There are so many that have suffered way worse than I have. I never mean to sound pitiful, this is truly the first time when I felt like I might not survive something. I'm better now but there were some days....Thank you for reading, be well

@pmpleakTo clarify...I was prescribed Dapsone FOR the Pemphigoid/Pemphigus and it has resolved 95% of the skin issues. DMSO is a bit controversial and definitely an alternative venue but with quite a bit of literature support. Dimethyl Sulfoxide is technically a solvent but has been shown to have tremendous anti-inflammatory properties. I use it as an oral rinse as a 25% solution with distilled water. I would recommend a bit of reading on it prior to use but for me this has been a game changer on helping with the oral bullous lesions. I wish I had known about it while in practice. I think it would have helped with a lot of introral viral and autoimmune issues for my patients.

@seniormed
Dear leak,
Agreed, Dupixent is the answer and hopefully it works for you too! I’m totally clear after five months on Dupixent (plus initial bridge with prednisone). No itching or blisters. Only issue is doctor doesn’t know when to stop med, might try break in a few months and restart if symptoms return. Drug is very expensive, but thank goodness Biden put $2000 cap on pharmaceutical expenses! Good luck!

My insurance does not cover Dupixent as a self-injectable, but if I go to the local hospital's infusion center and get the injection from a nurse (which is what I do), the whole visit is covered. Worth checking out your options if you are currently paying out of pocket or paying a large copay for Dupixent.

@jacqincalifornia @pmpleak @glongdmd @garf1
I have been diagnosed with Eczema by the main dermatologist I see.
Their PA said not Eczema and their other clinic dermatologist said DSAP.
Overall the way I look at it I have a skin condition.
The thing that somewhat frightened me a year ago is when the main dermatologist I see said to me "with what I am seeing on you most patients in a year develop BP." Needless to say after researching it I was concerned but so far it has not developed.

I do have BE, Bronchiectasis, which is related to much inflammation. It was diagnosed at nearly the same time as the dermatologist saying Eczema. I have had shingles, mild case, three times.

My question to all.
Did the doctors indicate your skin problems are related to inflammation?
Had you had any other skin conditions before developing the condition you speak of.? In particular BP.

All that I do so far is use CeraVe Moisturizing Cream 2x a day as suggested by the main dermatologist.
One of the symptoms I have is if I am in the sun or getting hot, even in the house, the areas where I have spots and is scaly skin, I begin to experience burning sensation internally in these areas. Any thoughts?

My how things can change no matter what our age. Both health problems showed up when I was 79, now 83. So at least I have had a good many years without both. I am fortunate.
Barbara