Connect
← Return to Hailey-Hailey Disease
Discussion
Comment receiving replies
Welcome to Connect, @huitzilin76,
I really like your sense of humor, especially when you shared, "After scratching my head (and a few other places) for about 12 years..." Maintaining a positive attitude while struggling with your health takes effort, but it certainly helps!
I'm so glad you connected with @danavs – thanks so much for sharing your insights, @danavs – and I do hope @dsl1 @christy5348 and others will join in as well.
Naltrexone (brand name Revia or Vivitrol) is a medication that blocks the effects of opiates,and narcotics. Originally used to treat dependence on opiate drugs, it has also been approved by the U.S. Food and Drug Administration (FDA) as treatment for alcohol dependence, and now, as an anti-inflammatory treatment for chronic pain and Hailey-Hailey disease, https://www.ncbi.nlm.nih.gov/pubmed/28768313
@huitzilin76, how has the tacrolimus ointment helped? Does it relieve the pain?
Replies to "Welcome to Connect, @huitzilin76, I really like your sense of humor, especially when you shared, "After..."
Connect
Thanks, @kanaazpereira! About the tacrolimus, I think it is mostly effective, but not so much against acute flare-ups. When that happens, I have a clobetasol ointment that helps to ease irritation, although I hesitate to use it regularly because of the subsequent thinning of the skin.
In my opinion, what has really helped me the most, especially in summer months, has been the oral glycopyrrolate. It really cuts down on sweating, and that makes a huge difference. Just two days without it lead to a dramatic worsening of HH.
I just ordered a tube of terrasil online, hoping that at least the anesthetic qualities will ease comfort as the current flare-up diminishes. It comes in tomorrow, so I'll update soon to let you all know if it's helpful at all.