Hailey-Hailey Disease

Tacrolimus

Hi @taurus430 !
So sorry to hear about your diagnosis and history of medical problems. I’ve been in a somewhat similar situation.

Changing my diet has completely changed things for me. I no longer get breakouts. I wish dermatologists would actually study and learn about nutrition and how food affects every part of the body.

The most effective preventative for me has been tacrolimus ointment nightly. For actual breakouts betamethasone heals them quickly. I’ve recently read about low-dose naltrexone as an option but no one in my area knows anything about that.

I was diagnosed with HHD in 1994 with a severe outbreak in between my legs. Two years ago I found a new dermatologist at the University Medical Center. He started me on cyclosporine and then changed my medication to low dose methotrexate. Even though HHD is genetic and NOT autoimmune, it cleared up my HHD completely. In the summer, with the heat, I can start to break out again, so I get Botox injections to minimize the sweating and I use cornstarch baby powder between my legs with an ABD dressing to keep the friction down. The cornstarch feels cooling on my skin. For topical treatments. I start with Bactroban cream, then if that isn't helping enough under my armpits, then I switch to Benzaclin, then I can switch to Altabax. I have to be careful with the Altabax though because it is an ointment. If it has a petrolatum base, it blocks the skin breathing and can cause a yeast infection to grow underneath it. So it has to be applied very thinly. Under my breasts, I use econazole cream because that tends to be a yeast infection more easily, as well as in between my legs. But I very rarely get an infection between my legs. So I basically use baby powder between my legs. If I have a lot of pain, I can use xylocaine 2% gel to numb the skin with whatever cream I am using. For the itching, if the xylocaine isn't enough, I can use 200 mg of cimetidine, (Tagamet), but just at the 200 mg dose because at the low dose, it works against itching. I also did testing for food allergies. I am allergic to rye, olives, and foods in the nightshade family, so I stay away from them. I hate olives and rye anyways, and I can eat tomatoes sparingly, etc. I hope my story helps.

I have had HH since I was 25 and am now 73 years old have had every kind of cream, lotion powder, shot, and anything else there is out there. Recently I went to a dermatologist and he suggested I try otezla He suggested I try it for an experiment that was three months ago and now I am HH free, it takes patience and waiting but it worked and I had to tell everyone

Do you use it daily or only when you have outbreaks?

I was using it daily when the outbreak was horrible. Now that I am 100% better I am waiting to see how it goes. My doctor has a request to Otezla to add haleys to the list of excepted medications it takes a while but with my results I will hang in there and let everyone know how that goes.

I'm a 68 year old man who first diagnosed at about age 38. I believe my mother and father both had this same disease though they never had it diagnosed. I have been lucky to control any outbreaks (typically 2 to 4 per year) with doxycycline and triamcinolone cream. However, I'm currently experiencing a fairly serious outbreaknin my groin area after having had mild outbreaks in both armpits. So far nothing seems to be working. But as I've learned over the years with this
disease occasionally it just takes longer to go away. So far I can maintain my normal activities sans any major inconvenience. Though it is uncomfortable but not unbearable. I've read where some people have had great success after going on a daily and permanent regimen of naxoltraxone. Given the many side effects associated with it I can't see myself resorting tonit unless things get far worse. Who knows what positive treatments might emerge down the road.

I have had outbreaks for about 30 years. Tacrolimus daily helped, and the best cream for treating breakouts for me is Betamethasone. However, breakouts became more frequent and harder to heal about a year ago. I started low dose (4.5mg) Naltrexone and Magnesium Chloride daily. I have been breakout free for several months. The reported side effects are minimal for the low dose Naltrexone and I am pleased with the treatment so far.

Hello I take a low dose and it works.