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Thank you for the information, @danavs; it must be exhausting to be so careful!
Have you heard about the drug afamelanotide? Here's a paper that was published about its efficacy in treating Hailey-Hailey disease:
http://bit.ly/2fpuxmQ and http://bit.ly/2em4U5u
Although Bullous pemphigoid is different, but since Hailey-Hailey disease belongs to the 'pemphigus' autoimmune disease family, I would also like to introduce you to @earljohnson5030, and @profkatg as they have discussed their experiences with Bullous pemphigoid. Or you can view the discussion within the Autoimmune Diseases group here:
http://mayocl.in/2ema9lV
@danavs, has your dermatologist spoken to you about afamelanotide?
Replies to "Thank you for the information, @danavs; it must be exhausting to be so careful! Have you..."
That drug is not available in the United states yet.
My derm is 100% against it. For one, it's not available in the US as far as he knows, and secondly, it would not be covered by insurance. Most importantly, there can be liver or kidney impairment: the metabolism of this drug is not completely understood.
It is also recommended that patients over 70 do not take afamelanotide.
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kanaazpereira, thanks for the info on afamelanotide. I will ask my dermatologist about it.