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Bullous pemphigoid
I went to bed one night fine and dandy, woke up next day with a light rash on top of both my arms. It rapidly got angrier, big red very itchy. Was spreading quickly. I went to my Dr. who had no idea at first what it was. Discovered it was Bullous pemphigoid. It's been almost 2 months and I'm finally getting better. Pure agonizing hell it's been for a lot of it. Eventually I had jawbreaker sized blisters, also some close to baseball size all over my lower legs, ankles, top of my left foot. When they eventually popped that left me with a lot of raw flesh and pain. I would sure love to hear about your story and how your'e making it through. At times I felt very terrified and alone and I have a wonderful family and husband helping me. I have so much more to say about the meds and lack there of but I'd like to see if I'm going to get any response here. I'm a 59 year old lady and this is my very first support group. Please feel free to chat with me, maybe sharing some of this misery will help, not to mention the sharing of experience. Thank you for reading!
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Greetings. I am not familiar with DSAP other than it being a hereditary condition. I think ALL autoimmune diseases causes some level of inflammation. My personal opinion after 40 years of practice is that inflammation, from whatever origin, is the cause of most clinical problems. Vesiculobullous diseases (such as BP, PV) are all autoimmune inflammatory problems specific to some cellular layer of dermal and/or mucosal tissues. The current treatments tend towards monoclonal antibody therapies, usually infusions/injections which interrupt or replace the wayward innate immune cells. I've been looking at alternative therapies because I've learned you have to be your own health-care advocate.
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1 ReactionBarbara, my understanding is that eczema is caused by an immune reaction which causes inflammation.
You asked about what people had prior to their eczema diagnosis. In my case, I had a couple of years of chronic urticaria. I was about to start treatment with Xolair when it started to resolve on its own, but shortly afterwards I had the initial BP-like outbreak, followed by more widespread (but not as virulent) eczema.
I had mild eczema, my BP started with deep, severe itching and initially Dr thought it was contact dermatitis—their usual default. Started prednisone. Then little blisters occurred and Dr did biopsy x2 to confirm BP. Six months on Dupixent and now clear.
BTW, if any insurance denies Dupixent, have physician help you appeal with biopsy result and photos.
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2 ReactionsI broke out in a flat purple rash all over my body, but not my face thankfully. Then it went into blisters that felt like bees stinging me all over. The trunk of my body and even the palms of my hands had blisters. 60 mg of Prednisone stopped it, but as I taper off of Prednisone and add Duplexent injections, I am crippled. Horrible leg pain in muscles and joints. Have been in the hospital 3 times for this pain. This is over a 6 month period. I am crippled and have a walker and have been unable to go to work. The trigger that started Perigoid in my body was an injection of Nemluvio from my Dermatologist for a minor case of eczema!
@mnblue50
I had Pemphigus Foliaceus yrs ago. I was on high dose 100mg- 40 mg of Prednisone for 5 yrs, then they added experimental chemo for 5.5 yrs. I was talking to my allergist/ immunologist and my primary care that if it would ever come back, they say they are biologic meds to help with pemphigus (auto immune issues) that is safer than long-term steroid use or chemo. Also, it never hurts to get a 2nd opinion. Also, do your own research to educate yourself. Years ago, I found a Pemphigus website that talks about the different forms of treatments.
@mnblue50
Did you notice the leg pain and joint pain after starting dupixent? Just wondering if it’s a side effect of the medicine?
@fessenbeck65 I started on Dupixent three years ago. I had no leg or joint pain whatsoever. In fact I noticed no side effects at all. Same for my sister who started on Dupixent a few months ago.
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1 Reaction@pmpleak
This is a rare disease. I live in the Los Angeles county which has a population of 10 million.
Bullous pemphigoid has a rate of between 2.4 cases and 23 cases per million. So most doctors even here could not possibly have seen many cases. When I first got big lesions on my stomach I went to the emergency room and it was misdiagnosed. When the huge blisters appeared on my feet and were 4 inches in diameter my GP diagnosed it and referred me immediately to a dermatologist who did a punch biopsy. I would guess that photos and information on the internet have been a big help in diagnosis and treatment. So they start treatment with steroids, ointment and oral. If that doesn't work well, they move on to Dupixent.I have had this for over 6 months and its difficult to wear shoes because of the blisters. I am not retired so thats a problem.
We are our best advocates. Its not likely even a dermatologist has a bunch of these cases. I was told not to break the blisters but I found that if I did not, when they broke by themselves or accidentally, it left a large open wound. If you carefully with sterile equipment make tiny holes in the side and remove liquid, they seem to heal faster and I have clobetsol to put on it or beyamethasone and bandage carefully. Amazon has large padded bandages (3 x 4 inches and 4 x4) non stick that I order and use. Lidocaine cream helps. The pain is a nuisance, but reading seems to distract me. What annoys me is that doctors are reluctant to prescribe pain killers because they worry we can become addicted.
I also have CLL leukemia and macular degeneration, so when I heard that this new disease affects my mortality rate I have to laugh as I am 90 and survived so far.
I have read that certain things can trigger an outbreak. I think Ibuprofen is a trigger for me.
Have any of you found something that triggers an outbreak?
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7 Reactions@marge727 Thanks for reaching out. Yes, this is horrible and was one heck of a surprise. I have never gone through anything like this. I'm not sure if I'll ever know what brought it on. I've had advil, aspirin, lisinapril for blood pressure. Mine started this last February and at this point im finally done, at least for now. Just waiting for my skin to clear, lot's of red scar like markings. I also had the huge blisters and tons of water retention, I guess from steroids. Miserable, couldnt wear shoes or even slippers, my clothes didn't fit. Basically i lived naked in a bathrobe for over a month. I sure wish you well. You sound like a strong lady with a good attitude. I'm trying my best. I'm turning 60 this month and I'm trying to stay positive. Take care
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1 Reaction@marge727 Thanks for the info.I agree with you about breaking the blisters when they are small. I have a big problem with my shin Big blisters. They are healing now.
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