Hailey-Hailey Disease

I was diagnosed by 2010 by biopsy with Grover illness, and five years after I was diagnosed by observation with Haley-haley.
Blisters are worst with age, skin is turning in some gray with elephant skin appearance. Treatment have been doxicycline and clindamycin phosphate 1% lotion. Lately it doesn’t works. I’d like to know if there is any possibility to find cases in remission and know more about treatment. Dermatologists do not have many cases or experience, they look curious but do not have idea about treatment. Thank you l

I am 83 and have Haley Haley disease for many years. I was told it would get beter as I got older, no such luck. Before it was under breasts bad, now in groin area and worst!. Our dermatologist just moved from St.Louis and was also a teacher at Washington University and she had me on Desoximetsone ointment and it worked for many years. Now this new Derm. put me on a strong prescription of Hydrocortisone 2.5% and it isn't helping. I must make another appointment with this Dermatologist a Dr. Martin. I should have asked her how familiar she is with this rare disease.
When I told her I use a bleach bath she thought that was too strong. My old Derm. before leaving handed me a paper of instructions and she had me do them before.

Hailey-Hailey
I have had this for over 40 years. I have recently been started on low dose Naltrexone by my dermatologist, 1.5 mg. capsules. They must be taken every day forever. I started a few months ago and it is the first time in 40 years my skin has cleared up and no erupted or fissured skin.
Also, before, during an outbreak, I used 500 mg keflex 4 times a day, used a combination of bactroban cream and clobetasol cream. Then last year the dermatologist added this other cream to be mixed with the other 2 to stop the odor that the outbreak causes..Metronidazole cream. During the out break, 2 times a day, I did a white vinegar wash. Equal amounts white vinegar and warm water ( just takes a small amount), take a white cotton cloth ( I used a cut up white kitchen flour sack towel) and dip in combination and lightly wring out and dab and hold on infected area. This helps with the bacteria that the HH causes.

I have had this for over 40 years. I have recently been started on low dose Naltrexone by my dermatologist, 1.5 mg. capsules. They must be taken every day forever. I started a few months ago and it is the first time in 40 years my skin has cleared up and no erupted or fissured skin. The small side effects are so worth this.

Laser treatment was not beneficial for me, The outbreak ended up going around the outside of the treatment area.
Hailey-Hailey
I have had this for over 40 years. I have recently been started on low dose Naltrexone by my dermatologist, 1.5 mg. capsules. They must be taken every day forever. I started a few months ago and it is the first time in 40 years my skin has cleared up and no erupted or fissured skin.
Also, before, during an outbreak, I used 500 mg keflex 4 times a day, used a combination of bactroban cream and clobetasol cream. Then last year the dermatologist added this other cream to be mixed with the other 2 to stop the odor that the outbreak causes..Metronidazole cream. During the out break, 2 times a day, I did a white vinegar wash. Equal amounts white vinegar and warm water ( just takes a small amount), take a white cotton cloth ( I used a cut up white kitchen flour sack towel) and dip in combination and lightly wring out and dab and hold on infected area. This helps with the bacteria that the HH causes.

Hailey-Hailey
I have had this for over 40 years. I have recently been started on low dose Naltrexone by my dermatologist, 1.5 mg. capsules. They must be taken every day forever. I started a few months ago and it is the first time in 40 years my skin has cleared up and no erupted or fissured skin.
Also, before, during an outbreak, I used 500 mg keflex 4 times a day, used a combination of bactroban cream and clobetasol cream. Then last year the dermatologist added this other cream to be mixed with the other 2 to stop the odor that the outbreak causes..Metronidazole cream. During the out break, 2 times a day, I did a white vinegar wash. Equal amounts white vinegar and warm water ( just takes a small amount), take a white cotton cloth ( I used a cut up white kitchen flour sack towel) and dip in combination and lightly wring out and dab and hold on infected area. This helps with the bacteria that the HH causes.

Hailey Hailey
I have been taking low dose naltrexone 1.5 mg for a few months and am completely cleared up. But this is something you must always take, if you stop taking it, the out break will re occur.

I only use the low dose naltrexone 1.5mg now, since the HHD has cleared, since I started taking it a few months ago. I haven't had to use any of the creams. Just take the naltrexone, forever I guess. I wish it didn't cause insomnia, and dreams. But the clear skin is worth it. I had my first HHD outbreak in 1980 and they didn't know what it was, they said it was herpes.

Hi @skrammy, welcome. I'm glad that low-dose naltrexone is helping you manage Hailey-Hailey. Is the naltrexone causing the insomnia and vivid dreams?

Yes I have insomnia and now that you mention it, vivid dreams. But I have also noted anxiety and fatigue, but that is probably from the insomnia. My husband and I were weighing the options, have the constant issue of outbreak and pain with it or deal with all the side effects.