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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.
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@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