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Rare scalp Autoimmune disease… lichen planopilaris

Autoimmune Diseases | Last Active: Sep 5 7:44am | Replies (49)
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@bren0718

I was diagnosed with Lichen planopilorus over ten years ago. It was very painful. Felt like my scalp was on fire and itched terribly. I was using Clobetasol daily and took an immune suppressant for about 3 years. It finally went into remission but I have bald spots all over my head. Luckily I have thick hair so it isn’t really noticeable. Lately I have had a lot of hair loss around my hairline. I don’t believe it has come back I just think it is male pattern balding. I’m a hairdresser and I had never heard of this before in my 40 years of doing hair.

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Replies to "I was diagnosed with Lichen planopilorus over ten years ago. It was very painful. Felt like..."
Becky, Volunteer Mentor | @becsbuddy | Mar 8 8:41pm

@bren0718 I’m so sorry about the re-emergence of lichen planopilaris. And have you started using clobetasol again? Here is a link to The Cleveland Clinic’s info on LPP.
https://my.clevelandclinic.org/health/diseases/24537-lichen-planopilaris
You’ve probably never heard of it because it’s considered ‘rare.’ But, then again, most autoimmune diseases are considered rare and not too well researched.
Are you going to see the same rheumatologist as before? If you need help finding a rheumatologist who has experience in LPP, you can contact NORD, the National Organization for Rare Diseases. https://rarediseases.org/
What questions would you like to ask them this time?

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