I have Bullous Pemphigoid and would like to connect to others.

I have Mucous Membrane Pemphigoid. It comes & goes & not many doctors have ever dealt with it.
Odd, but there isn’t even much on this Mayo Connect dire.
My only satisfaction was by going to the Cleveland Clinic. I’m seeing a few specialist here in Rochester, NY, but they do not communicate with eachother unless I force the issue.
I can’t find a Rheumatologist that will see me either.
Back to Dr. Jueng at the Cleveland Clinic, I guess.

BP is usually well managed if you have access to an experienced dermatologist. You will likely need a systemic drug such as prednisone
to start. Longer term low dose methotrexate can be a tolerable management
in low doses. Topical mid strength can be very helpful in milder cases and
relieve earl local breakouts. Make sure you review any other of your meds
with your dermatologist. Hope you can find more patients for input with their
experience. Their is an International Pemphigus & Pemphigoid Foundation
(IPPF) online for less common autoimmune skin patient resource.

I have no problem with my eyes or mouth, but I am glad you gave the name of the rinse in case I need it. My skin is getting much better now. I hope I don’t get any more blisters

I am now experiencing blisters that itch and burn when the break.
They are mostly on my arms but have also shown up on my , face, chest, and upper thighs. It has been 3 years since I was diagnosed with Bullous Pemphigoid.
There was a time last summer when I wasn't having any symptoms.
But this year is different. I went to urgent care at one point because I couldn't get in to see a dermatologist until July 28th. They prescribed clobetasol and doxycycline. They want me to take the doxycycline for 3 months and use the clobetasol for 4 weeks.
Iam into 1 month and nothing has changed.
I am at my wits end. My partner has cancer so I try to put things into prospective but it's not easy. I hope you are doing better.

At this moment I still have the red blotches, but I don’t put the creams on them because they don’t itch, and the rash is gone, but my skin is pink. I guess you have been on prednisone before the Doxycycline? I am on the Doxycycline, too, and get a shot every other week. I hope your inflammatory skin will go away quickly.

Hello @lisbeth. You will notice I have moved your post, and the replies, into an existing discussion that you can find here:
- Bullous Pemphigoid: https://connect.mayoclinic.org/discussion/bullous-pemphigoid-2/