1. < Skin Health

Hailey-Hailey Disease

Posted by danavs @danavs, Oct 31, 2016

I have a painful and itchy hereditary skin disease known as Hailey-Hailey. I am 78 years old and it has gotten much worse as I age. Before I fell twice in the last few months I was seeing my dermatologist every two months; now I talk to him on the phone or leave a message about my condition and prescription needs. The worst place on my body is between my legs and behind, causing horrible pain when I sit or try to get in and out of a car. I have the blisters, whelps, crusting, raw skin, and bleeding over much of my body and everything (clothing, bedding) hurts my body. Have had the disease in between legs/behind for 18 months; it gets a little better, then worse again and when urine touches it, I sometimes cry or almost scream. Do any of you or someone you know have HH?

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angelita1 | @angelita1 | May 5 11:23am
In reply to @contek "I have HHD, which was misdiagnosed for over 30 years as herpes, psoriasis, whatever. It was..." + (show)
@contek

I have HHD, which was misdiagnosed for over 30 years as herpes, psoriasis, whatever. It was finally correctly diagnosed via biopsy of an active lesion. While creams and powders helped with breakouts, nothing lessened the frequency until I started low dose naltrexone. Very few doctors have experience with HHD, so I researched it (primarily on PubMed) and brought the LDN treatment research to my derm. He was unaware of this option so researched it himself and started me on 4.5mg daily. I have not had a serious episode since. I do use medicated power daily to keep the problem areas dry, and Betamethasone if I get a small breakout. Starting LDN was life changing as I am a very active 69 year old and there were times it was debilitating.

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Hi, my dermatologist prescribed 1mg daily. And glycopirrolate to avoid sweating. I’m in a middle of a crisis and taking that for about two weeks, not sure if it is going to help. But thanks for mentioning. I’ll continue taking it.

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1 reply
angelita1 | @angelita1 | May 5 11:33am

Same here. When is smelly is infected, and sometimes the pain does not stop with infection. I’m taking naltrexone and glycopirrolate. Which is the treatment I researched and shared with my dermatologist. Some cases are improving with this.
Yesterday I discovered, when skin is super dry and erosive, taking short showers in that area helps, and I used a bit of liquid soap for sensitivity skin, (dove) scrubbing my hands and just placing them on between my legs softly, and rinsed it. That was a big change. Now my skin is kind of hydrated. And I can walk with not big pain. As I have an infection, I’m taking doxycycline, 2/day, and that tends to drying more the skin. I hope this helps. Unfortunately is a condition that science doesn’t have treatment, but reading studies/articles, help to understand what to add or learn in your life with it.
Sending hugs, and prayers because God can do everything that is not possible.

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angelita1 | @angelita1 | May 5 11:45am
In reply to @kanaazpereira "Hello @danavs, Hailey-Hailey disease (HHD) is such a rare skin disease, and it can be so..." + (show)
@kanaazpereira

Hello @danavs,

Hailey-Hailey disease (HHD) is such a rare skin disease, and it can be so painful; I'm very sorry. However, I'm glad you came to Connect to seek some answers. I'd like to introduce you to a few members; they don't have Hailey-Hailey, but hidradenitis suppurative, another rare skin condition, similar to HHD, and I hope they can provide some insight. Please meet @autumnleaves, @amy75, and @sandig.
I also hope @midnight, @mbrittain, @drew1991, @msdodo987 will return to give us an update on how things are going.

@danavs, have your doctors ever suggested a laser treatment? What do they recommend?

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My doctors tried multiple corticosteroids, and creams which do not work.
I read naltrexone, glycopirrolate, and doxycycline in cases of wounds infection helped. That is what I’m taking, waiting to get better with God’s will. My doctor injected me Botox, did not work and was super painful. Other doctor in my native country, injected my wounds directly. He was in gynecology-oncology department. I thought that was the first and the last time of a crisis, and I never asked what the medicine was. I was in remission for 6 years after that, then I came to the US and my symptoms started again, I just started Naltrexone 1g, and glycopirrolate two weeks ago. Waiting that works.
As I started in a middle of a hard crisis with infection treated with doxycycline, I think the effect is slowly, but I have faith in God, after the infection I’ll get better.
Many prayers and hugs for people who are suffering with this disease, I hope one day soon, science finds the cure. In the meantime sharing is relieving.

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rnwwmn1 | @rnwwmn1 | May 5 1:08pm
In reply to @lcl44 "I have some questions about Hailey-Hailey disease as my brother was diagnosed with it several years..." + (show)
@lcl44

I have some questions about Hailey-Hailey disease as my brother was diagnosed with it several years ago and had a serious, and prolonged outbreak. He is 90 now, with other problems so have not asked about HHD. We remembered our Dad suffering from rashes behind his knees and the back of his neck. I know this is hereditary with a 50-50 chance of being passed on, however neither my sister nor I exhibited symptoms. My daughter has suffered from severe rashes under her armpits, between and under her breasts and her doctor told her this was infected eczema. Whatever he prescribed has helped. However, I am curious as to whether she might have inherited HHD, especially since unexpectedly I have developed “jock itch” that makes me wonder if belatedly (age 80) I am showing symptoms. I have not been to the doctor yet, and have found Desenex powder relieves the itching. I know what I have is mild compared to what my brother or daughter have but wonder if I should get a diagnosis for my daughter’s sake. She would have a double whammy since her father has psoriasis.
Thank you in advance for advice/guidance!

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hello,
I have had Hailey Hailey Disease since 1986. Since HHD is exacerbated by heat, moisture, friction, or infection, I would say it is HHD. There is a website that has different tabs on it that you can get further information on HHD, haileyhailey.com, I suffered from constant skin breakdown for 20 years. then 2 years ago, I saw a new dermatologist at the university clinic. He prescribed cyclosporine which is used as an autoimmune agent. Even though HHD is NOT an autoimmune disease, it worked for me! then I was switched to low dose methotrexate and I maintained with hardly any breakouts. Once the skin breaks down, it is easy for it to get infected with a secondary infection, so antibiotic creams can help clear it up, but the skin breakdown is from the HHD.

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angelita1 | @angelita1 | May 5 6:25pm
In reply to @lcl44 "Our daughter is about the same age as you, @angelita1. She lives in Norway so medical..." + (show)
@lcl44

Our daughter is about the same age as you, @angelita1.
She lives in Norway so medical systems and terms are different. Some of the things she has tried ..
1) my husband’s Betamethasone Valerate on the assumption she had Psoriasis as he does, and that helped.
2) she said when she was on the Whole 30 diet, it cleared completely … but I gather that is a difficult regime to maintain.
3) her latest flare was when she was visiting recently and forgot the medication she is on for the infected eczema,
and very likely overdid the sugar and alcohol consumption during family celebrations! Sugar and alcohol are to be avoided on Whole 30 so that indicates, to me at least, a dietary modification to be considered.

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Hello
Thank you so much for your comment.
I’m sorry she had a new episode. I'd like to try that whole diet for the 30 suggested days.
Would you please provide me with the details of the t whole diet?
Thank you again

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lcl44 | @lcl44 | May 5 8:08pm

Hi @angelita1:
To be honest, I’m not very familiar with this diet, but thought that this article might be helpful.
https://www.everydayhealth.com/diet-and-nutrition/diet/whole30-program-what-know-before-starting-diet-plan/
Best wishes to you!

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contek | @contek | May 6 2:50pm
In reply to @angelita1 "Hi, my dermatologist prescribed 1mg daily. And glycopirrolate to avoid sweating. I’m in a middle of..." + (show)
@angelita1

Hi, my dermatologist prescribed 1mg daily. And glycopirrolate to avoid sweating. I’m in a middle of a crisis and taking that for about two weeks, not sure if it is going to help. But thanks for mentioning. I’ll continue taking it.

Jump to this post

LDN is a long term therapy so should be taken daily for prevention. I also take 520 mg of Magesium Chloride daily, which showed positive results in combination with LDN in the reasearch I did.

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1 reply
angelita1 | @angelita1 | May 7 10:46am

Hello, thanks for the comments in response to my comment. All the information i find here is pretty useful. My niece she was diagnosed with psoriasis and other dermatologist said HHD. She told me is taking Kolcha13 a natural medicine. As it is natural, i just take 3, next day the wounds (70%) were dry. I have some remaining places more resistant, right in the place were groins start. Still with naltrexone, glycopyrrolate, and doxictclyne for infection. I'll ask today my dermatologist about magnesium chloride. Not sure what is LDN? Thanks

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3 replies
angelita1 | @angelita1 | May 7 11:00am
In reply to @contek "LDN is a long term therapy so should be taken daily for prevention. I also take..." + (show)
@contek

LDN is a long term therapy so should be taken daily for prevention. I also take 520 mg of Magesium Chloride daily, which showed positive results in combination with LDN in the reasearch I did.

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Hello,
Did you find current studies? Unfortunately, the HHD web is not updated, and the lasts studies are from 2011. Probably there is one more that i missed? On my searches i had not find current studies about successful treatments. Thank you

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contek | @contek | May 7 11:19am

There are several on PubMed.

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