Hailey-Hailey: Anyone have some solutions that have worked for them?

Low dose naltrexone is working for me. 4.5 mg daily. I did research on PubMed and brought it to my doctor. I have been on it about a year now with only one small breakout.

Thanks,

Hi @kbetko, in addition to the tip from @contek, I'm tagging fellow members like @dschramek @rnwwmn1 @huitzilin76 @angelita1 @lcl44 @vthailey @denziejones @dschoening @keokuk55, who also live with Hailey-Hailey disease (HHD).

You might like to also review the helpful tips offered by members in thsi related discussion:
- Hailey-Hailey Disease https://connect.mayoclinic.org/discussion/hailey-hailey-disease/

Fir me laser treatment was the best.

After 38 years of trying many different prescriptions to be free of Hailey Hailey I began using Dupixent two years ago. I have been free of Hailey Hailey with self injection every two weeks. I cannot express what a blessing it was been. The only challenge is overcoming the cost.

My 20-year journey with Hailey-Hailey — what's finally helping

I've dealt with this for about 20 years, and like a lot of people here, I went through years of conventional dermatology without lasting relief — creams, steroids, the usual rotation that helps short-term but doesn't get at the root.

In January 2026 I started working with a naturopath and tried Low Dose Naltrexone (LDN). It slightly helped, but never cleared up my flares or skin. During that same period I ran an elimination protocol and found some real dietary triggers — cutting out dairy and seed oils made a noticeable difference in my flares.

Since then (June 2026) I've shifted to Traditional Chinese Medicine as my main approach, working with a TCM practitioner on a protocol that's been diagnosed as Blood Heat, Blood Deficiency, Kidney Yin Deficiency, and Liver Qi Stagnation. Treatment includes acupuncture, ear apex bloodletting, gua sha, and rotating herbal formulas (Xiao Feng San, Wu Wei Xiao Du Yin, Margarite Acne Pills, and others depending on what's flaring). I've paired this with nervous system regulation work and hypnotherapy, since stress is such an obvious trigger for this condition.

The single thing that made the biggest difference topically was a Chinese herbal cream called Qi Yang Jing (Miao Yao). It's marketed as having antibacterial and anti-inflammatory properties, and in my experience it noticeably calmed active lesions and helped keep them from getting infected the way they used to — it's become a staple in my routine alongside everything else.

This combination has been the most effective thing I've tried. My skin lesions have completely cleared, and I have never felt better or had this much relief. My practitioner still notes my "liver pulse" runs stressed, which tracks with how much load I'm carrying between work and family, so I know this is ongoing management, not a cure — but it's the first time in 20 years I've felt like I'm treating causes instead of just symptoms.

Happy to answer questions about any part of this if it's useful to others.

@cajones11

Thank you for sharing your journey.