Hailey-Hailey Disease

I am 46 yrs old. After suffering for about 15yrs, a dermatologist finally took a biopsy and diagnosed me with Hailey Hailey in 2020. It turns out that my father, his sister, and my cousin all have it. What I have not seen on any of these comments is anything about the medication Eucrisa. It is meant for peope with eczema. The dermatologist that diagnosed me prescribed it immediately. I use it twice every day on my “hotspots” as a preventive measure. Not sure how it works, but it has helped so much in controlling the flare ups. If I do feel I will be getting a flareup, right away, I apply a combination cream of clotrimazole and betamethasone. It is an antifungal and steroid cream. I use that only if I feel a possible flare up coming on. I use ice packs to control itching. Recently, I did have a flareup that was pretty bad and I attribute that to major stress and hormonal inbalance due to perimenopause. I took the advice of others on this discussion and started taking magnesium pills and vitamin D3 to keep it under control. I’ve been taking Zyrtec every day for a couple of decades. During a flare up, the only thing that helps with the itch and pain is if I increase my Zyrtec dose, use ice packs, and take Advil every six hours. There is a cream that I started that seems to help with the itch and speeds up the healing. This sounds strange, but it is the Cerave pm facial moisturizing lotion. I read the ingredients and it started to make sense because it has an ingredient called niacinamide and other beneficial ingredients to help calm and protect the skin barrier. Also, one of the big ones that I just recently learned is to avoid sugar as much as you can and try to eat anti-inflammatory foods instead. This really does help.
The order in which I apply everything is after bathing, I apply the Eucrisa prescribed by the doctor. I wait 15 minutes to let that absorb and then if I have a flareup, I will apply Neosporin ointment. I wait 15 more minutes after that and then I apply the Cerave pm lotion. This really seems to help! I am so glad that I found this discussion on Hailey Hailey. It really can have a great impact on the quality of your life. At times I feel very alone, and that no one will ever understand it. Here I found people that do. Thank you 🙏🏼

I have this horrible disease. It has become almost debilitating as I age. I am now 59 and have had symptoms since my 20s. It would be awesome if we could get some relief. All my siblings have this disease also. I do believe that I tend to have more breakouts than my siblings . I have not found anything that really works.

I also experience all of these symptoms. It seems like the only thing that really helps at all is getting g in the shower and rinsing off the affected areas. Good luck

My only comment is I am not understanding why as women when we are in so much pain we still feel the need to wear bras . I don't think I have worn a bra in almost a year. Unfortunately I do wear hoodies alot because of this disease when going out. Also because of this disease I hardly ever go out. I have scars all over me because of the lesions.

I also agree with the pool regime. My daughter has a pool and soaking in the chlorine water definitely helps. I have also tried to add bleach in my baths but this does not seem to work as well.

My first outbreak was also diagnosed as herpes. Which caused quite a bit of turmoil in my marriage. I had been married for about 3 years when I had my first outbreak and my family doctor turned and looked at my husband and asked him what did you do to this girl. Oh my how awful this was for us both. We were both questioning the faithfulness of each other. Then I was told about my family health history. Several people on my grandmother's side had HHD. My next breakout was about a year later which was extremely severe. I went to the hospital and a OBGYN was sent in to evaluate the situation and again diagnosed my with herpes. I was so upset that they also had a wound care specialist come speak to me. When I tried to explain to all the doctors involved none had never heard of HHD. Fortunately the wound care doctor was willing to listen to me. Awhile later he came back did a biopsy and confirmed that it was indeed HHD. I was given a cream to try to give me some relief. Also was given prednisone. After years of battling this disease it seems nothing really works much. I have also done the botox injection. Hopefully one day we may all find relief.

When stressed I also have flair ups Unfortunately I also have been told that stress is not a factor but I can tell you that it definitely is.

Oh how I feel that. I am so miserable all the time . I am in constant pain. Sometimes I can barely move. My employer would have fired me a long time ago if not for FMLA. I feel it will not be long if I can not get this under control I will not be able to work or I will eventually run out of FLMA and I will get fired. Not sure if it comes to this point if I am able to get disability fir this disease. I hope that at some point you will be able to find some relief.

I was diagnosed at age 26. At first it was diagnosed as herpes, too, until I had a Biopsy done. For a long time, I was treated with creams and fluconazole. Then two years ago, I met with the chairman of the dermatology at the University Hospital. He tried cyclosporine for about 6 months. (Even though HHD is NOT an autoimmune disease, the cyclosporine helped a lot). Then they switched me to low dose methotrexate, and now I have months of relief at a time, especially during cool weather. When it is hot, I get Botox injections for the summer and I use baby powder with cornstarch to keep my skin drier and it gives me the feeling of coolness, especially in my panty areas and under my breasts. I use mupirocin cream under my arms, and sometimes benzaclin, if it is especially painful, I will add xylocaine jelly to it and keep it in place with 8X10 in abdominal dressings in my panty areas, and under my arms I keep it in place with lidoderm patches or 4X4 inch gauze.

I am 65 and have had HHD for 45 years and inherited from my daddy. I was always told it was herpes simplex which was horrifying. I had a biopsy 13 years ago. I was a part of a forum in the United Kingdom for years, but could never find one here in the USA. I am thrilled to find a group. I have an outbreak of some sort almost constantly. My neck is an issue right now and overuse of steroids on underarms, groin, and neck have made my skin very thin. Oral antibiotics have helped at times. We raise cattle, so I sweat a lot. Chlorine baths help and I wash with Hebiclens. I also watch my diet with no sugar and no gluten. Peanuts and tomatoes are huge triggers plus stress. I just retired from teaching so that stress is gone and hopefully finding ideas from others on this forum will help.