Hailey-Hailey Disease without Cortisone

[RobinPaulWilliams]

Come on HHD community! - I want to hear about your experiences with Topical Steroids, getting off them and anyone (especially with HHD) who has tried Low Dose Naltrexone (LDN) or Afamelanotide. Please don't be shy! I know what its like to have the constant struggle with skin eruptions in the most intimate of areas!!!... or you can private-message me if you prefer pricacy... Robin

[Jedward4]

Hi Robin, I've had HHD for 40 years. Most topical steroids will cause thinning of your skin. After years of being prescribed so many antibiotics and topicals, I found my own home treatment that has worked well for me. Every other day I soak ( 15-20 minutes) in a warm bath with 1/2 cup of bleach (regular strenth, not concentrated). After bath, dry yourself well and apply Desitin (with 40% zinc oxide) to your problem areas. Zinc oxide is a drying agent and the Desitin is fairly thick which seems to help hold skin from breaking apart. I have been mostly clear for the last 2 years doing this. That's 2 years without needing to see a dermatologist or infectious disease Dr., and NO prescriptions! I hope this helps!

[RobinPaulWilliams in reply to Jedward4]

Thanks Jed for sharing your treatment plan. I am at the moment going through the Topical Steroid Withdrawal process, so my skin is rebounding and extremely delicate at present. I anticipate the Topical Steroid Withdrawal process to last at least a couple more months (but I am holding onto the glimmer of hope that it could be less...)

I know that you are finding chlorine helpful and when we have an outbreak, we will do anything to take it away, I know. However I am concerned about bathing in chlorine, as this chemical is known to affect our endochrine system (exactly what the topical steroids have done to me by leaching into my bloodstream from my skin).

I am trying to get an official diagnosis right now (not proving as easy as I imagined) and with this I hope to either get onto a programme to try the Afamelantide injection (reportedly a complete cure for 6-8 months - Doesn't this sound like heaven!!!) or Low Dose Naltrexone (LDN), which had good reviews in the medical literature last year. LDN is possible to obtain off-label with a valid diagnosis...

Keep in touch, my friend!...

Robin

[Feelyourpain in reply to RobinPaulWilliams]

I tried the naltrexone 1.5 mg but it made me sick and I could not take it .Doctor thinks it was the makeup of the pill base. not the naltrexone.Thinking of trying it again . One other thing about this med.You can not take any opioid medicine while your on it or it could be very serious