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