Hi, anyone dealing with lichen plano pilarus?

I was diagnosed 4 years ago.

Basically it’s lichen planus but of the scalp. The hair follicles are destroyed by the immune system attacking them.

I’ve lost more than 50% of my hair. When it’s flaring, my scalp burns so bad I can’t comb my hair.

I refused to take any of the treatments. For me the cure was worse than the disease.

I do use a helmet that emits red laser light therapy. This does help.

Just wondering if anyone has any suggestions.

Thanks