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Hailey-Hailey Disease

Skin Health | Last Active: Sep 3 7:58pm | Replies (169)

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@rhartz

At the age of 77, I have dealt with Hailey-Hailey for some 60 years and it has always been a nuisance. It runs in my family (my father and aunt had it, my sister and I do, but our brother does not, and five of my sister's seven children have it to one degree or another.) Six years ago one of my neices had a particular problem when she had to be treated for breast cancer. After a double mastectomy the stretching of he skin over the implants as well as the necessary radiation treatments were especially problematic. And of course all of the doctors needed to study what the heck HH was, as none of them had ever heard of it before. Over the years I have quickly developed an amunity to the treatments that have been tried; they would work at first, but then quickly lose their effectiveness. The one that was the best had worked for decades, but now I am finding that it is no longer working so well, particularly in the groin area; it is a mixture of two creams, Betamethasone and Gentamicin. While I was able to get them already mixed for some 40 years, they now have to be ordered separately and then I have to mix them together -- probably so that Medicare gets billed for two rather than one prescription. This year I have had probably the worst outbreak ever and it is in the groin area. What complicated it was that I underwent hip replacement surgery last month. The hip surgery went superbly; the Hailey-Hailey is still causing a problem although not as bad as before and especially right after the surgery. I've used the compound, as well as Halobetasol, Mupirocin and ordinary Vaseline on it; I also took a prescription of Prednisone. But I still have a couple of lesions from the HH as well as quite a few scared spots from where it had been. The irritation has at times been very uncomfortable, but fortunately not debilitating.

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Replies to "At the age of 77, I have dealt with Hailey-Hailey for some 60 years and it..."

I take 250mg Magnesium every day and use Pimecrolimus cream or Tacrolimus ointment and it has kept my skin healed since April of this year. Maybe that would help you. I also wear very loose clothes and keep friction to a minimum. If you are overweight please tey to loose a few pounds as that helps and drinking 64 oz. Of water ever day. I hope you get better and find your normal again. I have had HH since I was 35. I am 56 now.