I have recently been diagnosed with bullous pemphigoid and I am looking

Posted by ProfKatG @profkatg, Nov 25, 2012

I have recently been diagnosed with bullous pemphigoid and I am looking for others with the same illness - especially trying to find out what meds or treatment protocol has been helpful. Mine first appeared as blisters along the gum line - but has also progressed to other areas of my body in rash form. Any information anyone has will add to my current knowledge base of zero.

Interested in more discussions like this? Go to the Skin Health Support Group.

athena1626 | @athena1626 | Mar 30, 2018

It’s 6 years since your post but was hoping you still check his. I just got diagnosed today with this and am terrified as I have yet to know much about this thing, and seeing how few people are diagnosed I assume that means little is known about it at all let alone any closer to drs figuring out how to fix it. I think my body got triggers with it after taking amoxicillin for strep while I had been on humira for. Crohns disease. I am hoping to find people with it for the same reasons you listed and also just to help cope with the new illness added to my list.

2011panc | @2011panc | Mar 30, 2018

@athena1626 I read your post with interest as I was wondering if this was what had happened to my mother. You might want to check out the articles on this on the Mayo site. I also read the Wikipedia write-up, but can only recommend that site with caution. For me it is a good place to start and may give me clues of other places to search. I certainly hope you find someone to talk to about this and find some relief and treatment. Take care.

labcoris | @labcoris | Jan 24 6:43am

My Bullous pemphigoid always starts with the itching in the palms of my hands. It lets me know to call the doctor to get a jump ahead of it. The treatment for me is a cream called clobetasol propionate to be used twice a day and prednisone prescription depending on the severity of the breakout. It eventually clears up until the next time which might be years. I feel it is brought on by stress.

carbry | @carbry | Jan 25 11:38am

I have experience with this very nasty skin condition. My mother-in-law had it in her 90’s, and my husband has it now. For about 8 months my husband was treated with doxycycline and topical steroids. This barely kept it under control. The miracle for him has been Dupixent. His skin has completely cleared up. I give him injections twice a month. The only drawback is that it can be very expensive, but I think there are ways to help pay for it. He has had no side effects from it. I would highly recommended looking into it. I hope this has helped. You have all my sympathy in dealing with this very difficult condition.

labcoris | @labcoris | Jan 25 4:52pm

I will ask my dermatologist about it thanks!

richardg | @richardg | Feb 28 10:21pm

In reply to @athena1626 "It’s 6 years since your post but was hoping you still check his. I just got..." + (show)

It's been 6 years since your post, 12 since the first post! But in case anyone sees this, there is a great organization called the IPPF, the International Pemphigus and Pemphigoid Foundation -- their website has a lot of great free info about these auto-immune blistering diseases. (My family member has Bullous Pemphigoid)

the website is pemphigus (dot) org (slash) patient-resources

There are dozens of great videos in their archive of patient educational webinars. It's all free. They also have local support groups and peer coaches you can get in touch with. Highly recommended.

Please sign in or register to post a reply.