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Hailey-Hailey Disease

Skin Health | Last Active: Sep 3, 2024 | Replies (169)

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@skrammy54

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.

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Replies to "I only use the low dose naltrexone 1.5mg now, since the HHD has cleared, since I..."

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?

My first outbreak was also diagnosed as herpes. Which caused quite a bit of turmoil in my marriage. I had been married for about 3 years when I had my first outbreak and my family doctor turned and looked at my husband and asked him what did you do to this girl. Oh my how awful this was for us both. We were both questioning the faithfulness of each other. Then I was told about my family health history. Several people on my grandmother's side had HHD. My next breakout was about a year later which was extremely severe. I went to the hospital and a OBGYN was sent in to evaluate the situation and again diagnosed my with herpes. I was so upset that they also had a wound care specialist come speak to me. When I tried to explain to all the doctors involved none had never heard of HHD. Fortunately the wound care doctor was willing to listen to me. Awhile later he came back did a biopsy and confirmed that it was indeed HHD. I was given a cream to try to give me some relief. Also was given prednisone. After years of battling this disease it seems nothing really works much. I have also done the botox injection. Hopefully one day we may all find relief.