Rare scalp Autoimmune disease… lichen planopilaris

Posted by patsydell @patsydell, Nov 28, 2022

I have lichen planopilaris where my hair is falling out. From what I understand you lose your hair and it will not grow back. Was diagnosed by having a scalp plug taken out and diagnosed I would like to know if anyone else has this disease and has had any success with any medication’s or shampoos that have helped prevent hair loss. I used to have beautiful thick hair and it’s very depressing I can finding fallen hair everywhere. When I shampoo my hair is the most depressing to see the handful of hair that has come out.

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My mother lost all her hair; cause unknown since it was many years ago. She had hot lamp treatments at a clinic. Her scalp peeled then all the hair grew back. It didn’t fall out again except normal hair loss.

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@willows

My mother lost all her hair; cause unknown since it was many years ago. She had hot lamp treatments at a clinic. Her scalp peeled then all the hair grew back. It didn’t fall out again except normal hair loss.

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Wow very interesting. Too bad you don’t know for sure what the problem was. I don’t have a heat lamp to even try it. Thanks for sharing. Blessings!

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All I know is that it started by having bald spots the size of a loonie then it progressed to total balding. She wasn’t sick, took no medication, was not under treatment for anything.

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I have it, too. Nothing seemed to help. I used topical clobetasol every other day but basically only marginally helpful. I was diagnosed with breast cancer in March and had chemotherapy. Guess what? The lichen planopilaris cleared up when I had no hair. My hair is growing back now. My dermatologist warns me that the LP will likely return but so far so good. However, I wouldn't wish chemo on anyone.

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@willows

All I know is that it started by having bald spots the size of a loonie then it progressed to total balding. She wasn’t sick, took no medication, was not under treatment for anything.

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@willows could that have been alopeicia areata …?

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@rashida

@willows could that have been alopeicia areata …?

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Rashida I think it might have been alopeicia since she also lost her eyebrows. I also have problems with hair loss but not to the extent my mother did. Incidently, this is hard to believe but true. My mother had light brown hair originally but when her hair grew back it grew in almost black. She said she didn’t care what colour it was, she just wanted hair on her head. At least that wish came true!

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I also have Lichen Planopilaris....diagnosed back in April. It is very depressing as being told the hair will not grow back is devastating. I have tried lots and lots of things. Went and got a hair topper which is very easy to wear and not a full wig.
Then I read about Micro Pigmentation which is basically having your head tattoo'd. Not cheap, it hurts but seems to have made a difference for me. 3 sessions....about 2 hours each though other places may modify the time/number of sessions. This will not stop to LP but will cover up the bald spots....I hope this helps

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I also have lichen planopilariasis confirmed by scalp biopsy. I still have it. I received steriod shots in the affected areas of my scalp plus I received a prescription for a steriod cream-Betametasome. I use it every day, finally some tiny hairs started growing but my LPP has moved on to new places in my scalp. I got a refill and have been using it in the new areas. I also have a upper respiratory illness for over a month, so I have not been back to my dermatologist. I made another appt for the respiratory illness, right now, it takes priority. I have drunk a lot of fluidsl had many antibiotics and steriod pack and still can't get over it. Before using the ointment on my scalp, it felt like my scalp was on fire! Have you had that feeling??

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@carolee888

I also have lichen planopilariasis confirmed by scalp biopsy. I still have it. I received steriod shots in the affected areas of my scalp plus I received a prescription for a steriod cream-Betametasome. I use it every day, finally some tiny hairs started growing but my LPP has moved on to new places in my scalp. I got a refill and have been using it in the new areas. I also have a upper respiratory illness for over a month, so I have not been back to my dermatologist. I made another appt for the respiratory illness, right now, it takes priority. I have drunk a lot of fluidsl had many antibiotics and steriod pack and still can't get over it. Before using the ointment on my scalp, it felt like my scalp was on fire! Have you had that feeling??

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I'm sorry and hope you recover from respiratory soon. Two dermatologists Said lichenplanopilarus and looks like frontal fibrosing alopecia ..female pattern baldness or androgenic alopecia. I get first biopsy in a few weeks..YES my scalp so tender and feels inflamed like on fire..thank you for sharing your treatments. As soon as I see the specialist I will share his recommendations for me. It's a devastating rare condition that I'm told is chronic lifelong and can change move to other areas.

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