Looking for inflammatory scalp disease expert!

[brsjo]

Hi, I have a 2 year history of a seemingly inflammatory scalp condition that has caused terrible hair loss. First dx with sebohorreic dermatitis and then psoriasis. Basically, sebum builds up in thick layers on my scalp and kills my hair follicles (it does not make my hair greasy). Red dots and cherry angiomas have popped up and small bumpy sores as well (perhaps follicitus). Have had inconclusive scalp biopsy and have tried every steroid/anti-fungal/herbal solution under the sun. Basically, nothing topical works. My hair looks healthy (a little on the dry side), but it won't stay in my head, and at times during the month when my prolactin is high (ovulation, period), my scalp throbs. Seems like some sort of inflammatory response to androgens (got worse after stopping my birth control). Does anyone know of a dermatologist who is an expert in inflammatory processes. I've seen 3 dermatologists locally, and they can offer no more help. Please respond if you have a suggestion! I'm willing to travel. At this point, I'm losing all my hair and my sanity too.

[Hidden]

When I had hair loss my rheumatologist was the person who really sorted it out. I have psoriatic arthritis and the hair loss occurred while I was having a big psoriasis flare up. The first bald patch was where I'd had a pile of ... something, possibly a build up of sebum as you describe. Is yours basically like concrete? Strangely the actual psoriasis on my scalp wasn't really too bad. However for years I had inverse psoriasis in my armpits and I now have almost no hair growth in that area. The loss of hair on my head involved completely bald patches, big ones.

My rheumy's light bulb moment was suggesting that the fact that I'd recently stopped taking methotrexate could have triggered the psoriasis flare and consequently the hair loss. To cut a long story short, I re-started Methotrexate and my hair began to grow back almost immediately. I would suggest that you may need medication to deal with this if indeed it is due to inflammatory disease of some kind. From my own experience psoriasis seems a possibility but of course that would need to be investigated thoroughly. I'm afraid I don't know of a suitable dermatologist, my derms in Shrewsbury pretty much needed a huge kick up the backside from my rheumy. But you could strongly suggest that your current derm consider systemic medication and see what they say.

[brsjo in reply to Hidden]

Thanks for your reply, postle2! Yes, my buildup is like concrete. Nothing removes it. Thankfully, I have not lost patches of hair, just significant diffuse thinning. I saw a rheumatologist who diagnosed me with fibromalygia when my rheumatoid factor came back normal, but I've always wondered if it was psoriatic arthritis since my neck "turns to stone" (can't move it) on days when my psoriasis is flaring. I did ask my derm if I could try systemic medication but she is reluctant to prescribe this. There is only one rheumy under our insurance plan (I live in the U.S.) so I may have to look for someone out of network. Appreciate your thoughts!

[Hidden in reply to brsjo]

Looking for a new rheumy sounds so easy, but I realise it isn't, especially if possible insurance restrictions are factored in. However I am pretty sure that many (most?) rheumys would seriously consider the possibility of psoriatic arthritis if you have joint issues plus psoriasis. Unfortunately rheumatology services the world over seem patchy. Do you suffer from fatigue at all? And also how are your nails? That last question is because around 80% of people with PsA have nail psoriasis, which doesn't necessarily look too bad, many assume their nails have a bit of fungal disease. I hope you don't have PsA, but if you think you may have it then perseverance is often required and the treatment works very well for many of us.

[Hidden]

I have just asked where you are, on your other post. Now I see you are in the US, have you looked at the following site? It might be helpful

rarediseases.org

[jbirck]

Ive had psoriatic arthritis for over 20 years. Never had psoriasis. About 5 years ago or so I noticed some small bumps on my scalp they don't hurt, itch sometimes and there getting bigger. I'm loosing hair a lot. I've told my rheumy about it but he never said anything about it. Just made a joke. I'm just curious if that's what it may be.

[MorningSun]

These stories sound like mine. The last post or comment was 4 years ago. Updates? I’m losing hope & not feeling heard.