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Hailey-Hailey Disease
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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I was just diagnosed today, the PA called with my biopsy results. I have yet to be seen by a doctor and I am going on 5+ weeks with pain swelling and red rash in my groin and under my breasts. I need help and relief. Can someone Help me. I live in Sarasota, Florida.
I have had Hailey-hailey for 20 years. Get your doctor to put you on Tacrolimus ointment and begin taking Magnesium supplements. Wear loose clothing and try to eliminate friction. That is what makes your skin come apart. Good luck
I, too, have had HH for about 20 years, but was only diagnosed a couple of years ago. I’m using tacrolimus ointment, sometimes a steroid ointment when the inflammation is too much. How much magnesium do you take, and does it cause unwanted side effects (like taking milk of magnesia)?
Sorry to hear, I take 250mg once a day with food. If I take more I get diarrhea. It helps skin remember how to heal and stretch.
I use a translator. Posted from Japan.
I would like to hear more about Naruto Kileson's treatment.Are there any hospitals in Japan that can teach such treatment methods?How long should I use Naruto Kileson or Tacrolimus for how long? I want you to tell me.Does the person who controls the disease have the same control in the summer?
I am Japanese. please tell me. Is it difficult to treat with naltrexone alone without tacrolimus? Tacrolimus is not prescribed in Japan because of its side effects. Naltrexone has been in use for 4 days. I also take magnesium supplements.
Hello, I'm only taking Low dose naltrexone 3mg at the moment, no tacrolimus. I also take magnesium chloride. It has to be chloride not sulfate. Also, vitamin D3 3000iu daily. I've only been on it for 2 weeks now and seeing improvements. My dermatologist also gave me mupirocin ointment to apply to the areas.
You need to avoid sugar and go on a low carb diet. Tomatoes also increase inflammation which is not good for hailey-hailey. I have had flares for the past year and doing these and taking my meds are really helping. First time in a yr that I'm not in severe pain and healing.
Good luck and I hope this helps. This is a terrible disease.
You need to find a dermatologist specialist who knows about the disease. In the mean time start using mupirocin ointment same as bactroban, and start taking magnesium chloride at least 250mg daily. Use a surgical wash to clean the areas, it antimicrobial. I have been diagnosed 7yrs now. I wish you all the best. Let me know how you are. I'll keep you in my prayers.
Thank you. Naltrexone 4.5mg daily and magnesium chloride 3g aqueous solution daily, vitamin D daily 1000IU. I didn't get any prescriptions. I hope you all get better.
Pimecrolimus is an alternative that I use. Can you get that on Japan? I dont do naltrexone only pimecrolimus and Magnesium 250mg. Have been lesion free one year.