Hailey-Hailey Disease

I use hydrogen peroxide to clean. Surgical is too harsh. Friction is what makes it worse and sweating.

Pimecrolimus is not available. Is it difficult to treat with naltrexone and magnesium chloride alone? I don't know where there are knowledgeable doctors in Japan. You might get a drug called tacrolimus.

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.

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.

I am scheduled for hip replacement early next year. I have HHD but releatively mild. No current outbreaks. Past outbreaks are normally in neck/shoulders/trunk area. I am sure the incision area will result in HHD and am concerned about the inevitable secondary infection at the skin surface level. Also concerned the infection will migrate to the joint which would be very problematic. Has anyone with HHD had this type of surgery and any observations and recommendation?. Many thanks.

Hello I have had HHD since about 10 yrs old. Finally diagnosed in my early 20s. I noticed that if I go in swimming pool consistently my blister and flares almost completely heal. Maybe the chlorine. Only problem is I have an outdoor pool I can only use during summer so winter flare ups are a pain. Mupirocin seems to help during flare ups but not as must as a swimming pool.

I too am 78 years old and have dealt with Haley-Haley since I was a teenager; furthermore it is also all through my family. I had a second hip replacement in October and it was no problem at all. Much worse was an outbreak of HH in the groin and crotch area that began during the summer. I've had it there now and then, but this was the worst time ever. For decades I have used a compound of two cream mixed, Betamethasone and Gentamicin, but it does not always work anymore and did not work in this case. What finally did work has been a combination of Doxycycline, Tacrolimus ointment, and Halobetasol Proprionate Cream. Good luck. I have never in my life met anyone who has HH outside of my family (my father and aunt, my sister [but not my brother], and five of my sister's seven children). At this time her 24 grandchildren are not old enough to see who will share this family problem.

I have had HH since I was 35, Im 57. I use pinecrolimus ot tacrolimus cream and take 250mg of Magnesium everyday. I have been HH free for a year. In groin area i was lightly (friction is bad) and sprinkle cornstarch powder to help with sweating. Wear loose fitting clothes and get lots of rest. When HH gets infected, I use a triple cream (used for motorcycle road rash patients) it has a steroids, so only use if infected, not everyday. Stay cool and do not get over heated. Take lots of breaks and lose weight if you ate overweight. I lost 25 pounds and that helped with strain/stretching of skin. I wish you good luck.
Denise

I’ve had HH since my early 20’s, but wasn’t diagnosed (through biopsy) until i was 47. It seems to be getting worse since menopause. I have a couple of questions...one, are there any studies currently happening in the US? And two, has anyone with HH had experience with the Covid vaccine?

Hello @mickey1014 and welcome to Mayo Clinic Connect. I know you are interested in hearing from members with regard to the COVID vaccine or clinical trials, however, i wasn't able to find anyone who has shared about either.

Members such as @dschoening @rhartz and @rescuefavbreed have all been recent contributors to this discussion and may have more to share on one or both of your questions.

You say your symptoms have become worse since menopause. Can you elaborate while we wait for other members to join?