Hailey-Hailey Disease

That drug is not available in the United states yet.

I also have HHD and am experiencing the worst flair up ever. I am 55 and post menapausal. My areas are under my arms. I had cortisone shoys that helped a little with inflammation. Then I tried Botox and it just made my skin really red at post 1 week. Then I noticed an odor and was given fluconazole pills and an antibiotic. That helped somewhat. I went to The Wound Center in Omaha and they gave me a compounded Triple Cream and it really helped. But skin only heals to a point and when I sweat or use arms more skin splits again. I'm now trying an ointment called Tacrolimus 0.1 and taking Magnesium supplements. I'm seeing some of the redness and inflammation lessen. I will use Triple Cream to keep yeast away and then back to Tacrolimus. Ointment burns slightly for first 30 minutes and then is ok. I use micro cloths to keep meds off my clothes.
Best thing I've found is a dermatologist that listens to me and communicates well.
I'm not expecting a miracle but trying to improve quality of life. I cant do what I used to and wear very loose clothing. Keeping cool and not sweating is key. Friction is my enemy. I dont scrub, I pat. I dont let nurses put adhesives on me. Corn starch powder works when I can use it.
I had lazer hair removal on underarms and it really helped as I didnt have to shave so no stubble. Insurance paid for it as it was a treatment, not cosmetic. Hormones and being overweight trigger it. But trying to lose weight/sweating isnt an option yet. Exercising up to the point of sweating and then cooling down and repeating seems to help.
I have had this since I was diagnosed at 35 and it didnt get bad until my hormones changed.
I hope this help someone.
Denise Schoening

Vaseline to coat skin will help with urine stinging and protect skin. Please try. Denise Schoening

I want you to know that I completely know what you're going through and I have found treatment that 100% treats HHD! my husband and family have all suffered through this horrible diease all their life. His mother is 85 years old, and only now have they all found treatment. It's a miracle, and want to first give many thanks to dermatologist, Adean Kingston, Dallas Texas for successfully treating my family.
Please go to your dermatologist and have them put you on 5 mg. Tacrolimus twice a day and also 4.5 mg naltrexone every other day. This is an ongoing preventive treatment, not a cure but after a while on tacrolimus, they say that you may be able to not take the tacrolimus until you have the beginning of a flare start to show, but going back on the tacrolimus as soon as a flair starts should get rid of it quickly. It's important to tell your dermatologist that this is the oral tacrolimus, not the topical. I swear, this is the only treatment you'll ever need. My husband and family have been Haily free since last June. My husband is 62 and it was killing him. If you have trouble getting your dermatologist giving it to you, Dr. Kingston suggested going to the dermatology department at your nearest University, or having your doctor call her in Dallas, number is +1 214-420-3376.
Please pass this information on to all that need it. It's all you'll ever need to try again. Important to never miss a dose, or HHD will come back immediately. Good bless and good luck!

Have they ever stopped the Naltrexone? I was told if you ever did it would cause it to flare worse and then nothing would work thereafter.

See my post from earlier today. Important to use oral tac, not topical. 5 mg. 2 x daily, with 4.5 mg naltrexone every other day. Won't take long to clear up, and stays gone! Miracle! Tears of joy, and my family has tried EVERYTHING!!!

My husband missed for awhile with no side affects. This is the oral kind. But, if he misses a dose of the tacrolimus, it will immediately start to flair. Once he takes his missed dose, it goes away immediately. They say after a time, the tacrolimus may build up enough to go off indefinitely, but we are not there yet. The tacrolimus seems to be the treatment that works, maybe without the naltrexone, but don't want to go without just in case it's a cocktail of the two. Also, when you do the tacrolimus, it can be tough on kidneys, he has to get constant blood work done to continue getting the prescription.

This sounds so promising. I have been using the Tacrolimus ointment with Magnesium supplements. Have had raw underarms since last April. I'm seeing some improvement but very slow. Just left message with my Dermatologist office. Going to see if this us first me. THANK YOU

I am a 70 year old woman with HHD and new to this group. Lucky me, my skin has been much better since menopause but also may be factor of lifestyle changes I made decades ago. My first dermatologist in my 20’s told me it was my imagination that skin was worse during monthly menses

but we women know that is true. I agree with all recommendations I’ve read here and have a few others to share. Many decades ago I read that HHD sufferers in UK were using Mitchum’s deodorant on erupted skin to help dry it up and it worked! Have used only Mitchum’s under arms (and other places) since. A dermatologist once recommended that I use Hibiclens surgical cleanser in my armpits, groin, under breasts and in anal area and not use soap or other cleansers on my body at all (except hand washing, shampoo, etc). This also worked well for me and that’s all I use to bathe or shower. And I cannot stress the importance of patting affected areas then letting everything else air dry before dressing. In my 30’s I started the South Beach Diet (low carb/sugar, low/good fat, moderate protein and dairy) and my skin “loved it”. Also I lost 20+ pounds and gave up wearing tight clothing. It hasn’t always been easy staying away from chocolate, alcohol, and refined foods, not wearing metal necklaces, and only wearing cotton underwear. But they were all lifestyle changes that helped me. I hope they may help some of you as well.