Bullous Pemphigoid

Hello @yolanda53, Welcome to Connect. There are two older related discussions on Connect but I'm not sure if the members who participated in the discussions are still following. Mayo Clinic also has information on the condition - Bullous pemphigoid - Symptoms and causes: https://www.mayoclinic.org/diseases-conditions/bullous-pemphigoid/symptoms-causes/syc-20350414

- I have recently been diagnosed with bullous pemphigoid and I am looking: https://connect.mayoclinic.org/discussion/i-have-recently-been-diagnosed-with-bullous-pemphigoid-and-i-am-looking/
- Looking for info on medications for Bullous pemphigoid: https://connect.mayoclinic.org/discussion/ive-been-diagnosed-with-bullous-pemphigoid-and-i-need-to-find-if/

Have you been diagnosed with Bullous Pemphigold?

Thank you John for the information. Yes, I have been diagnosed with this at this time and knowing what I'm learning is a shock to say the least. In any case, my dermatologist is helping me along the way and hopefully we will lick this..... If not, well. We'll see!

@yolanda53, I'm glad to hear your dermatologist is helping you. Have they been able to provide any tips or suggestions for you that you can share? Have you seen the International Pemphigus & Pemphigoid Foundation website? They have a list of patient related links and some information about nutrition that may help you learn a little more about the condition.

- https://www.pemphigus.org/patients/
- https://www.pemphigus.org/nutrition/

Thank you John for this very very important information on nutrition as well as getting the COVID shot! Very appreciative to you!!!!!!! Wow, I was gonna just get the shot as soon as I could have......

Do you have Bullous Pemphigoid disease?

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 know it different than mucous membrane Pemphigoid, but there are similarities.
How are you doing?

It is pretty good in my mouth now. I rinse & spit Dexamethasone 3Xs a day. I just hope it doesn’t get worse. So far the eyes are ok.