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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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tylerh456 | @tylerh456 | Jan 15, 2023

I have lichen planopilariasis and I lost most of the crown of my hair but I changed my diet and hair products and my hair started to grow back. Plus I tried reducing my stress levels but my son passed away and now my whole body aches with chronic pain and my hair is feeling it too again.

When I first got diagnosed with lichen planopilariasis i had the same chronic pains in my muscles and was stressed with work.

Do you think it's related to lichen planopilariasis?

Has anyone else experience this?

Thank you

REPLY
2 replies
carolee888 | @carolee888 | Jan 15, 2023
In reply to @kfskfskfs "I'm sorry and hope you recover from respiratory soon. Two dermatologists Said lichenplanopilarus and looks like..." + (show)
@kfskfskfs

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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I have both, the lichen planopilarisis is the one that burns. The only symptom that I had with the frontal fibrosing alopecia was loss of hair. It did not get red or tender. I know, I have already lost my underarm hair. One place heals as another one starts. And I have a place in between where I hair on my scalp and LPP on both sides. There are round places that get sore.

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kfskfskfs | @kfskfskfs | Jan 16, 2023
In reply to @tylerh456 "I have lichen planopilariasis and I lost most of the crown of my hair but I..." + (show)
@tylerh456

I have lichen planopilariasis and I lost most of the crown of my hair but I changed my diet and hair products and my hair started to grow back. Plus I tried reducing my stress levels but my son passed away and now my whole body aches with chronic pain and my hair is feeling it too again.

When I first got diagnosed with lichen planopilariasis i had the same chronic pains in my muscles and was stressed with work.

Do you think it's related to lichen planopilariasis?

Has anyone else experience this?

Thank you

Jump to this post

I think stress can cause so many illnesses and symptoms in the body. I am so sorry for your loss. That kind of stress is hard to fathom. I have LPP. Frontal fibrosing alopecia variant. Dx two months ago ..it's scarring so hair follicles that have died will never produce hair again. I now have chronic pain in my shoulder..I would ask your doctor or dermatologist about your body pain though..I have read that having one autoimmune disease could lead to a second..comorbidity ...
Search DonovanMedical
Dr Donovan is a wealth of info his site is incredible..Jeff Donovan Whistler, Canada

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1 reply
tylerh456 | @tylerh456 | Jan 16, 2023
In reply to @kfskfskfs "I think stress can cause so many illnesses and symptoms in the body. I am so..." + (show)
@kfskfskfs

I think stress can cause so many illnesses and symptoms in the body. I am so sorry for your loss. That kind of stress is hard to fathom. I have LPP. Frontal fibrosing alopecia variant. Dx two months ago ..it's scarring so hair follicles that have died will never produce hair again. I now have chronic pain in my shoulder..I would ask your doctor or dermatologist about your body pain though..I have read that having one autoimmune disease could lead to a second..comorbidity ...
Search DonovanMedical
Dr Donovan is a wealth of info his site is incredible..Jeff Donovan Whistler, Canada

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Thank you so much.💓

I will ask my doctor and I will definitely check the artical out too.

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patsydell | @patsydell | Aug 25, 2023
In reply to @tylerh456 "I have lichen planopilariasis and I lost most of the crown of my hair but I..." + (show)
@tylerh456

I have lichen planopilariasis and I lost most of the crown of my hair but I changed my diet and hair products and my hair started to grow back. Plus I tried reducing my stress levels but my son passed away and now my whole body aches with chronic pain and my hair is feeling it too again.

When I first got diagnosed with lichen planopilariasis i had the same chronic pains in my muscles and was stressed with work.

Do you think it's related to lichen planopilariasis?

Has anyone else experience this?

Thank you

Jump to this post

I had biopsy and I also have this auto immune disease. Used to have long, thick hair and I’m losing hands full of hair every day. It’s very depressing. Could you tell me what shampoo you used and what nutritional you ate.Thank you

REPLY
patsydell | @patsydell | Aug 25, 2023
In reply to @willows "My mother lost all her hair; cause unknown since it was many years ago. She had..." + (show)
@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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Why did her scalp peel? I wonder if the heat lamp is still standard treatment?

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patsydell | @patsydell | Aug 25, 2023
In reply to @carolee888 "I also have lichen planopilariasis confirmed by scalp biopsy. I still have it. I received steriod..." + (show)
@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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My scalp itches like crazy and is red and inflamed. I am losing hair by the hands full I got a refill for the shampoo I was using a year ago and hope I curtail some of the hair loss.

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patsydell | @patsydell | Aug 25, 2023

Shampoo is called ketoconazole

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willows | @willows | Aug 26, 2023

I think it peeled as a result of the hot lamp burning it intentionally.

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jigster1 | @jigster1 | Aug 27, 2023

I have Lichen PP and was diagnosed perhaps a year and a half ago.
My dermatologist has me on 1/2 pill of Minoxidil (2.5 mg) as well as
Dutasteride cap 0.5 mg 5 days per week. (do not take it on the weekends)

I also had microblading done to my scalp (3 sessions) which is basically
tattooing your scalp.

My hair loss is NOT noticeable now and I feel so much better. Have
stopped wearing hats everywhere. I am a Type 2 diabetic so am on some
other medications also.

So far, so good......

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