kanaazpereira, Connect Moderator. Thanks. HH is because a missing gene causes the skin cells to become unstuck, so laser surgery is out of the question. I refuse any surgery because it messes up the skin so bad. Even the pads they put on chest and under breast to monitor everything for a colonoscopy leaves my whole chest messed up forever. Last time they used juvenile pads and it wasn't quite as bad. Skin on skin causes flare-ups, so I pat skin with corn starch on much of body every day. I have been using corticosteroids for years which is the only thing that helps to keep it from spreading and lessons the pain, but it also causes the skin to become thin. Anti-fungals helps some with the itching. Heat outside and heating in winter inside makes condition worse. I trust my dermatologist with treatment and he also has wonderful, caring bedside manners - which we all need.

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.

I received naltrexone, glycopirrolate, ibuprofen, Botox, gentamicin, muporucin. Nothing helps. I’m in the middle of a crisis. Looking for something kind of help.

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.