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Hailey-Hailey Disease

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

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@rnwwmn1

Hello, another new person here. I am a 62 year old female, diagnosed with HHD when I was 34. I was started on oral prednisone and fluconazole and hormone replacement therapy to suppress menses. Menstrual cycles definitely made it worse! I did see a dermatologist for a while who actually knew the Hailey brothers. He prescribed a series of creams. (He told me to try to stick to creams, because petroleum based ointments could cause underlying infections. He suggested that I use a serious of creams for about a week or so: Bactroban first, then Duac, and then Altabax-very sparingly. He also suggested that I use ice packs or frozen wash cloths. My family doctor suggested that I use only 200 cimetidine for itching. The low dose helps with itching. A higher dose does not help. Now that I am in menopause, it has changed. In 2021, I met with the chairman of the dermatology clinic at the University Medical Center. He put me on cyclosporine 100 mg. orally for about 6 months, and my symptoms completely subsided! Then I was transitioned to methotrexate 7.5 mg once a week, and my symptoms have subsided a lot. If I get affected by heat, I do have small outbreaks. I tried Botox to reduce sweating, but I tried walking during the summer heat, and I broke out everywhere! When I stopped that activity, my skin calmed down. Now my skin is clear again. I use baby powder with corn starch, (not talc) in my groin area to avoid skin breakdowns. I use econazole cream under my breasts if it like it is going to get raw. I use dry disposable washcloths under my breasts to absorb the sweating so that it doesn't stay moist. I use 8X10 inch absorbing dressings, (ABD's) in my underwear to avoid friction and heat. I wear cotton clothing. I am very careful about trying to stay out of the heat. I can walk outside during cold weather and at the end of the day when it is cooler. In the summer if it gets too hot, I have to stay out of the heat.

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Replies to "Hello, another new person here. I am a 62 year old female, diagnosed with HHD when..."

Try using Desitin (zinc oxide) under your breasts and in other body folds. It treats diaper rash in babies by forming a moisture barrier, and it does the same for those of us who need a moisture barrier for other reasons. I swear by it.