Hailey-Hailey Disease

Both of our daughters usually don’t wear a bra because if they have the HH under their breasts, it’s very painful to wear a bra, especially on the bottom of the breast and on your stomach. Thankfully they have No scaring from the blisters. Eliminating as much sugar from your diet does help. Also staying out of the sun and not sweating also helps. I am 76 and have had it my life, also 5 of my 6 brothers. Only 1 brother and my sister was lucky enough not to get it. HH is generally passed from father to daughter or Mother to son. Good Luck with it.

I have been diagnosed with Hailey Hailey Disease since 1986. At first I was prescribed different creams, but they did not help much. In 1994, I was given fluconazole for a superimposed yeast infection, that helped. In 1999 I had a severe outbreak throughout my inner thighs, entire perianal area, under my breasts, my underarms, and neck crease. I was prescribed Bactroban for 2 weeks, Benzaclin for 2 weeks, Altabax for 2 weeks. That routine helped some, but not completely. I used ice cubes to deal with the severe outbreak under my arms. The heat really made the outbreaks worse. I had to make a point to stay out of the sun and heat. In 2021, I met with another dermatologist from the university clinic. He put me on a trial of cyclosporine, (even though HHD is NOT an autoimmune disease, it is a genetic disease). To my surprise, the HHD symptoms diminished greatly! After that I was put on a low dose of methotrexate and my HHD symptoms were gone. I have had minimal symptoms since then.

I also have xylocaine 2% jelly to numb the area if it is too raw and painful. I haven't had to use it since 2021.

I had a flareup over a year ago, and there were secondary infections with pseudomonas and strep. Oral doxycycline plus gentamicin ointment knocked it out for a year. Now as soon as the HH acts up, a little clobetasol and gentamicin keep it from getting worse. Over a year without a real flare!!
(I am 47 and female.)

All these things that everybody is saying is just hearsay, my father had it, my brother has it,I have it my sister has it. My daughter has it. It just goes down to genetic line in the whole family. Nothing seems to help, you think you take something and you don’t have a few years, and boom the next year you get it! I was clear since 2016. I had it for three months and was in bed for a month. It was awful the worst I’ve ever had it nothing helped. It just went away finally .I didn’t do anything different. Didn’t take anything different and boom all of a sudden I get it back bad , now 2024, just a stupid mutant gene that decides to come out whenever it feels like! Then goes away just like that!

These things are not hearsay. I am 67 and I was diagnosed by a punch biospy when I was 18. There were years of minor flares, but there were some very bad ones. I have seen several very good dermatologists who have kept up with the disease and we've tried different things. A burst of prednisone used to bring a flare under control, but we don't want to use that too often, especially now due to the possibility of osteopenia.
My Mom and her Dad had it. Thankfully, my brother does not and neither of my sons do, which means it stopped with me, thankfully.

My derm is 100% against it. For one, it's not available in the US as far as he knows, and secondly, it would not be covered by insurance. Most importantly, there can be liver or kidney impairment: the metabolism of this drug is not completely understood.
It is also recommended that patients over 70 do not take afamelanotide.

Things that have helped me:
3 weeks of prednisone.
Kenalog shot (very good for itchies!)
Topicals: ketoconazole if yeast is present; Xepi cream - it is a form of antibiotic if you have yellow blisters; Clobetasol cream (or ointment); Pimecrolimus cream - it is a non-steroidal anti-inflammatory. I have had four different dermatologists. They either retired or I moved away. I picked them by calling their office and asking if they had any experience with HHD. I will not go to a derm who is not familiar with it - it is a waste of my time and money. My current derm actually did a paper on HHD, and he is young. We have decided that if the time comes when I have too many flares severe enough for a burst of prednisone, that we will try cyclosporine. Methotrexate is out of the question as my mother had non-alcohol related liver cancer.
There is an old webpage that has an excellent "Letter to Healthcare Team" that every HHD patient should have on hand to give to their regular PCP and to any clinic or hospital, especially if they are admitted. That webpage is still up, and you can just scroll down to the link to the letter. Because I cannot post the link, here it is written out: haileyhailey dot com slash hhd-society

If you can find Mitchum unscented antiperspirant gel, you can put it under both breasts and in any creases. It really helps with sweating. I haven't had a flare under my breasts since I started doing this, or under my arms because I use it as deodorant too. I also use bras from 32 Degrees - their "cool bralette" and "Scoop longline comfort bra" are insanely comfortable and washable (hang to dry).