Hailey-Hailey Disease

@vthailey
About diet, I've stopped eating gluten almost entirely and have had success. This is just my experience, but hopefully it helps.
I had HHD flare ups for a couple years. Flare ups happened a few times a year across my chest, neck and forearms, plus constantly under my armpits and on my torso. Not the scalp like you mentioned.
Dermatologist biopsied my armpit to diagnose the HHD.
A family member told me they had gone gluten free and it helped, so that's where I got the idea.
I stopped eating wheat completely and I've entirely cleared up. I haven't had to be as extreme as avoiding cross contamination. Then eventually I could eat a few bites of things containing wheat flour occasionally and been okay. I mean a bite or two every couple weeks. That's been a year and a half ago. There are so many options to go gluten free it's very doable once you make some adjustments and have some support.
There are a few other people on this group who say they do low carb diet, low sugar, reduced tomatoes, etc.
I asked my dermatologist about going gluten free and he said he didn't know that it was studied. But it's what has helped me.
About other things I do to manage it: I shower soon after exercise.
I use a body powder in my groin to keep it dry. Air out after showering. Manage stress, my first big flare up happened related to a very stressful situation, so trying to be aware of that. No idea if anyone else saw a connection to stress. I don't see that on this group.
If I overdo eating some gluten I get a small sores first under my armpits, so I use mupirocin to prevent it getting infected and then get really diligent again.
As I said, just my experience. Hopefully you find relief.

@fill thank you for your reply! It sounds like you know what works for you which is part of the hurdle with this. Any information that I can gather is helpful. I believe stress did cause this flare as this is the first time I have had any issues with my skin. I guess I have been lucky. I am making adjustments to my life, diet as well as adding supplements and am hopeful for progress. Thanks again and be well.

Hey everyone, looks like i joined the club that no one wants to be apart of :(.

Horrible rashes in my groin area that wouldn't go away. Finally diagnosed with HHD, my mom supposedly has it but never knew what it was. I'm having such a hard time with this. I also have HSV and so i'm never sure which is it or is it both? I have found relief by using triamcinolone acetonide and covering that with A+D baby ointment. Actually one side went away, but i'm very active and love sports so decided to try a dressing on it to protect the rubbing and to my surprised it worked so well... I could barely feel it, the next day same thing (felt it a bit more this time), but once i took the dressing off... All hell broke lose, i must not have been careful enough or I got the thin ones which stick harder and OMG, worst pain ever. It tore off skin on the folds on my leg/groin and that is the worst. Could barely walk, luckily my dermatologist prescribed lidocaine cream to help with the pain and so far it has helped a lot. I have also been taking Fluconazole tablets (200mg) to help with any fungal or yeast (which i'm pretty sure is happening - because the smell was so bad).

I saw in some of the post about tracrolimus so i'm going to try that, I have .01%, but stopped using it a while ago because it was burning a bit. Trying that in combination with the lidocaine and the a+d ointment.

I'm going to read more of the responses here, but are yall finding anything legit that works?

Oh also, the itching... This is what i'm having a hard time with. The triamcinolone acetonide ointment works, but only sometimes and on some parts.

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.

Your Words are of my mouth. I've had this disease since I was 15 after a rape it came upon me, I have never been completely clear spent many many years with horrible pain I'm 61 now and it seems I just can't get a break I hate my life

Have you found anything to be helpful. I have gone through several phases with different treatments. I am doing okay right now.

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.

Hello, I am 61 yrs , I have had HHD since I was 15,When I went into menapause I haven't had more than 4 mos free of serious break outs in 7 years I feel very hot to the touching my growing area no where else I have tried so many things I heard of a Chinese piil plum flower Something doesnt work soon I can't live like this anymore.

Hi pj,
I am 62 years old. A couple of years ago, after a horrible summer of breakouts everywhere, (underarms, under breasts, and groin) I was able to get an appointment with the chairman of the dermatology at the University Hospital Clinic. I was started on cyclosporine, an immunosuppressant, for six months and that calmed everything down quickly. Even though Hailey Hailey disease is genetic and NOT autoimmune disease, the cyclosporine worked! Then I was switched to methotrexate low dose and that has continued to help. For topical creams, I use Bactroban for a week or two, if that is not helping enough, I switch to Benzaclin for another week or two, and lastly I switch to Altabax, thinly applied because it has petroleum in it. A dermatologist once told me to use creams and not petroleum because your skin cannot breathe through the petroleum, and it can cause things like yeast infections to grow under the petroleum. I usually only have to switch to Altabax once or twice a year. I use the creams under my arms, and occasionally in my groins if the skin breaks down. I use econazole under my breasts, and it usually clears up within a week. For my groin area, I use baby powder with cornstarch regularly. I like the cooling affect of the cornstarch. And I use ABD pads, (abdominal pads 8X10 inches in my underwear to avoid any rubbing. I also use underwear that are cotton shorts so that I don't have friction along the panty lines. That is what works for me right now, I hope that helps.

I also have xylocaine jelly 2% to use to numb my skin when it is painful and/or burning.