Hailey-Hailey Disease

@huitzilin76 and anyone with HH- My dermatologist had me try a compound Naltrexone 3mg caps because my HH had gotten so bad. This drug in 30mg is for some other problem, but scientists discovered it helped HH get well as long as you continue taking the compound. The first thing it did was stop the itching, then the pain and every thing except between the legs & behind was gone. The HH between legs & behind was shrinking. Then I ended up in the hospital where they stopped the drug to see if it was interfering with blood pressure meds. The HH returned with a vengeance! So I called dermatologist to have doctor put me back on the compound, which he did. Now I'm just waiting and praying it will start working again. Just 2 days without compound made such a difference. If your dermatologist will try this one on you, don't let anybody take you off it. It may take a month or more to start working but be patient and I hope it will work for you. It was miraculous how it worked and I intend to keep taking it now and praying it will work again.

The naltrexone definitely sounds like something to ask the doctor about!

Welcome to Connect, @huitzilin76,

I really like your sense of humor, especially when you shared, "After scratching my head (and a few other places) for about 12 years..." Maintaining a positive attitude while struggling with your health takes effort, but it certainly helps!
I'm so glad you connected with @danavs – thanks so much for sharing your insights, @danavs – and I do hope @dsl1 @christy5348 and others will join in as well.

Naltrexone (brand name Revia or Vivitrol) is a medication that blocks the effects of opiates,and narcotics. Originally used to treat dependence on opiate drugs, it has also been approved by the U.S. Food and Drug Administration (FDA) as treatment for alcohol dependence, and now, as an anti-inflammatory treatment for chronic pain and Hailey-Hailey disease, https://www.ncbi.nlm.nih.gov/pubmed/28768313

@huitzilin76, how has the tacrolimus ointment helped? Does it relieve the pain?

Thanks, @kanaazpereira! About the tacrolimus, I think it is mostly effective, but not so much against acute flare-ups. When that happens, I have a clobetasol ointment that helps to ease irritation, although I hesitate to use it regularly because of the subsequent thinning of the skin.

In my opinion, what has really helped me the most, especially in summer months, has been the oral glycopyrrolate. It really cuts down on sweating, and that makes a huge difference. Just two days without it lead to a dramatic worsening of HH.

I just ordered a tube of terrasil online, hoping that at least the anesthetic qualities will ease comfort as the current flare-up diminishes. It comes in tomorrow, so I'll update soon to let you all know if it's helpful at all.

Thank you all for this page. I have HHD also, dx with it 6yrs ago and I have not gotten much relief from with meds I've been put on. Not much time in between flare ups. Went to my primary care doc 2 weeks ago and got cortisone injection and pills plus antibiotics and antifungal, it worked for the duration of the treatment and about 4days after, but flare up came right back. Im so tired of the pain, itching and smell of this disease. I have it all over my body... between my legs, under my breasts, on my neck, under my armpits, sometime under my gluteal folds, and right now on my labia and groin. I need help. I just asked my pcp to refer me to a dermatologist. Im pretty new to the area and have not established a dermatologist yet. These flare ups are making it hard for me to work..I work in pain all the time. I hope I can get some relief soon....and my poor husband is suffering too due to lack of intimacy. I am frustrated. Please pray for me. I am using clobetasol mix with mupirocin, but it doesn't seem to be helping anymore and my skin is getting very thin. I can't even cover up the rash with any kind bandaid as removing the bandaid peels my healthy skin off so I'm left to only use foam bordered dressings to cover the areas so I work with alittle relief from the pain. The foam bordered dressings are so expensive. I buy them on Amazon because the medical supply stores are outrageous with their prices. I hope the dermatologist that I will be referred to knows about this disease. I am willing to try anything at this point. I have written down all the treatments that are suggested on this page. Thank you all. I am relieved that I'm not the only one who has this diagnosis.

@jasrend, My heart goes out to you. What is helping keep the pain away for me is using mupirocin ointment then Desonide cream over that and if there remains pain I add prescription lidocaine ointment over that. If it's hurting badly to begin with I start with the lidocaine ointment. I am also taking fluconazole 150 mg tablets once weekly and minocyclime 50mg capsules once daily,both antibiotics.

The only thing which was healing the HH was as I wrote above, " My dermatologist had me try a compound Naltrexone 3mg caps because my HH had gotten so bad. This drug in 30mg is for some other problem, but scientists discovered it helped HH get well as long as you continue taking the compound. The first thing it did was stop the itching, then the pain and every thing except between the legs & behind was gone. The HH between legs & behind was shrinking. Then I ended up in the hospital where they stopped the drug to see if it was interfering with blood pressure meds. The HH returned with a vengeance! So I called dermatologist to have doctor put me back on the compound, which he did." Starting over with this product did not work, If the Dermatologist will let you try this and you will not let anyone stop it even for one day, it may be the answer to stop the disease. It's a compound because it's only 3mg of a 30mg Naltrexone tablet. Blessings to you and I'll be praying for you,

Thank you everyone for sharing everything you have experienced. I am a 55 year old woman diagnoses with HH when I was 35 years old. I have HH mainly under my arm pits and sometimes the corners of my mouth and at my temples (winter months). I do know that inflammation is what start off a lesion. Before I have an outbreak it feels like my skin is sunburned. Putting Fluticasone ointment on it can sometimes lessen it. Friction also causes it. I had to re-think all my shirt/blouses (for loose fitting, not tight shirts) and go bra less as much as possible. When I first saw doctors I felt like they wanted me to shower/wash more often and in reality all the washing/friction was causing my problems. It is REALLY important to find a dermatologist that is sympathetic and listens to you.

I found that as a woman, shaving my underarms caused more outbreaks since when the hair grew back there would be a stubble that would cause lesions. My dermatologist suggested lazer hair removal, and although a little painful, we noticed a big difference. I went 1.5 years without any outbreaks. I can NOT do band aids as they rip my skin. I found when I went off birth control pills that my arms exploded! It was the worst I have ever experienced. My GYN put me on hormones (lowest dose) and I was healed within a week! So hormones DO have a LOT to do with outbreaks. I am currently in Menopause and while menopause is not causing me any problems, my HH is! My wonderful dermatologist moved to another state and I am currently trying to find a dermatologist that is sympathetic and provides me more than 15 minutes a visit when I need it.

My right armpit has decided since April to erupt and is very painful (feels like I severely burned it). Did Cortisone shots (8 of them) and was put on an antibiotic. The Cortisone provided temporary relief from the burning, but I am allergic to the antibiotic and thought I was going to die, the side effects were terrible! So I went to a new dermatologist and he put me on Fluconazole pills (yeast infection medicine) and suggested I try Zeasorb Anti-fungal power on skin that wasn't raw. I see a little improvement around the edges, but the powder migrated into the fold of my armpit and became a paste. So I try to carefully shower every other day and have been using Vaseline on the shredded part to take away the stinging/burning, which takes me to today.

My underarm's skin has been shredded since April and it is now September. I called my current dermatologist and am going to ask him about the medicines that have been mentioned in this discussion site. I am hopeful that either this outbreak finally goes away on it's own, or something he prescribes works.

I have found that so far, not one thing works. HH changes as you age and if you try to lessen friction and tight clothes it does help. I do use Cornstarch powder and Secret spray deodorant when I have no lesions, it keeps my skin dry and yet powder slippery. DO NOT USE stick or roll on deodorant you will tear your skin.

I would like more information on how to been seen by the doctors at Mayo clinic. I'm not sure there is anything they can do for me, but we need more doctors working on a way to improve our quality of day-to-day life. Just because there isn't a quick fix cure doesn't mean we aren't suffering and need help improving the quality of life we have. Please don't tell me you will pray for me, I appreciate your concern - I lost religion years ago.

Thank you
DSchoening

Hi everyone!
I am 22 years old, and just got diagnosed with Hailey-Hailey disease. I first showed symptoms of HH over a year ago, but just had a biopsy this week. No one in my family has this, and I haven’t been able to determine what causes my flare ups. Do any of you have advice for me? What makes it worse? What makes it better? Have you tried a treatment or prescription that you liked? I have my HH in my armpits and on the sides of my torso; I’m hoping it doesn’t spread. I don’t want to wear long sleeves for the rest of my life. Thanks in advance!

Hi @maleahanne, welcome to Connect. As you start your research about what helps manage Hailey-Hailey and what makes outbreaks works, you'll read tips from fellow members like @danavs and @huitilin76. In fact, @dschoening also recently joined Connect and offers several things that help her manage and avoid outbreaks like loose-fitting clothes, going bra-less when possible and what deodorants might make things worse.

@dschoening did you get a new prescription from your dermatologist?

@malehanne, were you diagnosed by a dermatologist? What treatment if any was recommended?

Help! I am 35 year old female with HHD, I get really bad flare ups under my breast and it seems there is nothing that helps. My skin under my breast is thin due to the steroid topicals. When I have a bad flare up I also notice a smell which my dermatologist has said it’s a yeast infection under my breast as well.Is anyone experiencing this issue?