Lichen Planopilaris...newly diagnosed

Posted by ginyer @ginyer, Feb 17, 2020

Hi, new to the site and new to the diagnosis. Just was hoping to touch base with anyone else that may have dealt with this or be dealing with it. I’ve had thinning of hair over the years but it would always stop and some would come back, but I would say this “dropping” as I call it has been going on over a year now…I’ve seen the dermatologist in the past and we never knew what caused it. I was at dermatologist for a completely different issue, no intention of her looking at my scalp, but she did and immediately wanted to take a biopsy. She said the name and said, no, this was a brand new issue, and the biopsy came back as the lichen planopilaris. I just had my first set of scalp injections today. Anyway, if anyone else is dealing with this, would be very interested in treatment plans, etc.

Liked by siroisjli

Is this the same as lichen planis? I cannot exactly remember the differential diagnosis that the locum tenums (?) rheumatologist gave me. My hair falls out the grows back but is vinstantly shedding at a rate where i NEVER get any growth longer than a shoulder length. What are your other symptoms? I have psoriasis and PsA and have been on biologics for 20 years. I also got a differential diagnosis of Bechet's syndrome at the same time. My ENT and dermatologist are so slow to respond i have yet to get a biopsy to confirm anything.

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@lorrainechavez

Is this the same as lichen planis? I cannot exactly remember the differential diagnosis that the locum tenums (?) rheumatologist gave me. My hair falls out the grows back but is vinstantly shedding at a rate where i NEVER get any growth longer than a shoulder length. What are your other symptoms? I have psoriasis and PsA and have been on biologics for 20 years. I also got a differential diagnosis of Bechet's syndrome at the same time. My ENT and dermatologist are so slow to respond i have yet to get a biopsy to confirm anything.

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I could be wrong as I've just started trying to research the situation, but I think the difference is that the planopilaris is strictly the scalp as opposed to oral, etc. I had had bouts of hair shedding over the years, but it would usually stop..this was so much worse and has been like a year and a half since it got so extreme but I was taking vitamins, etc., that I thought would promote regrowth, but had no idea that is no option with this autoimmune disorder or that I even had an auto immune disorder. it cannot regrow once it is gone with this diagnosis. I have other conditions such as diabetes, etc., but nothing that contributed to this I don't think. I hope you are able to get a biopsy if one is needed…I was lucky that thankfully the dr noticed and acted quickly. I was actually at the visit for an unrelated issue so For that I am grateful.

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what kind of injections? been diagnosed with lichen planopilaris last Sept.Using ratio clobetaso 0.05% on scalp and a bacterial pill but the pill work so been 3 weeks on a new pill. This pill has to have my blood monitored once a month and my eyes checked freqently. I think I would rather have my eyesight rather than my hair.But I will see how things go. I just hate losing my hair.

Liked by siroisjli

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what kind of injections? do they help?

Liked by siroisjli

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I was diagnosed with lichen planopilaris 13 months ago by my dermatologist during an annual skin cancer screening. I have had steroid shots in my scalp every 3 months, I take 200 mg of hydroxychloroquine twice daily. I put a mixture of fluocinonide0.05% and men’s romaine (half and half) on my scalp every night. I bought a laser had and use it every other day for 30 minutes. I also tried PRP (had three treatments). I discontinued that treatment because initially I lost a lot more hair. I do not seem to be losing a lot of hair now, still have scarring bald spots that will never regrow hair. I always have new hair coming in, sometimes more than others. I would like to know if anyone has shampoo products to recommend. My hairdresser colors my hair with henna . I am only washing my hair once a week and do not use a hair dryer. Would like to hear from others with this problem.

Liked by siroisjli

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@nets2020

I was diagnosed with lichen planopilaris 13 months ago by my dermatologist during an annual skin cancer screening. I have had steroid shots in my scalp every 3 months, I take 200 mg of hydroxychloroquine twice daily. I put a mixture of fluocinonide0.05% and men’s romaine (half and half) on my scalp every night. I bought a laser had and use it every other day for 30 minutes. I also tried PRP (had three treatments). I discontinued that treatment because initially I lost a lot more hair. I do not seem to be losing a lot of hair now, still have scarring bald spots that will never regrow hair. I always have new hair coming in, sometimes more than others. I would like to know if anyone has shampoo products to recommend. My hairdresser colors my hair with henna . I am only washing my hair once a week and do not use a hair dryer. Would like to hear from others with this problem.

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Hi @nets2020, welcome to Mayo Clinic Connect. I am glad to hear that you are having less hair loss recently.

I am including one of Mayo's Q and A on treating hair loss:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treating-hair-loss/
The henna sounds like a great way to remedy some of the hair loss and discoloration. Do you find that it helps with self confidence?

Liked by siroisjli

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Yes, the henna colors my hair and I have let my hair grow longer in order to cover the bald spots I have. I do think the laser hat and rogaine are helping with new hair growth.

Liked by siroisjli

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I have been using the low light therapy hat also and feel it helps. Apple cider and water have helped with the itching and pain.

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Has anyone recently been disagnosed with Lichen Planopilaris? Would be interested in your results following biopsy and treatment.

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@tsafer

Has anyone recently been disagnosed with Lichen Planopilaris? Would be interested in your results following biopsy and treatment.

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Hi @tsafer, welcome. I moved your question about Lichen Planopilaris (also known as lichen planus) to this existing discussion. I did this so you can meet fellow members like @ginyer @lorrainechavez @nets2020 @siroisjli @pat68 @lfj9487 @joy4trees @fdixon63 and others.

Tsafer, have you been recently diagnosed with LP? What treatment plan was suggested for you?

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@colleenyoung

Hi @tsafer, welcome. I moved your question about Lichen Planopilaris (also known as lichen planus) to this existing discussion. I did this so you can meet fellow members like @ginyer @lorrainechavez @nets2020 @siroisjli @pat68 @lfj9487 @joy4trees @fdixon63 and others.

Tsafer, have you been recently diagnosed with LP? What treatment plan was suggested for you?

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I was diagnosed last week and was prescribed Clobetasol Propion. It is only mildly helping and my skin is still burning and hair falling out. As it is only 6 days, I'm hoping for improvement. The scalp is still extremely sore where there are 3 stitches from the biopsy which the surgeon said would not fall out for another 6 weeks. – j

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Hi tsafer. Join the club–the one you don't want to be a member of. I've dealt with LP off and on for many years–mostly in my gums. I began a flare in August and now have it in various places all over my body. Dermatologist said this flare was due to his freezing off precancerous places on my face and hands. I have itching of the scalp and have lost quite a lot of my hair. I've been through a few cream-type treatments and trying to be watchful of diet, in case that can be a problem as well. You will see so many prescription and natural treatment suggestions. As you read this group's input, everyone seems to be different. LP is a very mysterious condition. Best of luck. Keep us updated if you will. Faye

Liked by rashida

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@tsafer

I was diagnosed last week and was prescribed Clobetasol Propion. It is only mildly helping and my skin is still burning and hair falling out. As it is only 6 days, I'm hoping for improvement. The scalp is still extremely sore where there are 3 stitches from the biopsy which the surgeon said would not fall out for another 6 weeks. – j

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It has now been 2 weeks of treatment with Clobetasol Propionate. My scalp soreness is improving but the itchiness is still there. I read that one of the side effects IS itching so I cut back the morning treatment. My hairdresser was very kind to come to my home and gave me a short haircut which helps in seeing new spots if any. The nape of my neck area was also very sensitive but is improving. So far, so good. Just wondering if anyone with Lichen Planopilaris has tried Rogaine with success. I have read that it does not work, but I’m an optimist. – tsafer

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@tsafer

It has now been 2 weeks of treatment with Clobetasol Propionate. My scalp soreness is improving but the itchiness is still there. I read that one of the side effects IS itching so I cut back the morning treatment. My hairdresser was very kind to come to my home and gave me a short haircut which helps in seeing new spots if any. The nape of my neck area was also very sensitive but is improving. So far, so good. Just wondering if anyone with Lichen Planopilaris has tried Rogaine with success. I have read that it does not work, but I’m an optimist. – tsafer

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For those recently diagnosed and still suffering from burning sensation and pain, I found that ice packs helped considerably even during the night.

Liked by siroisjli

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Yes, the cold helps. I have been looking for "cold caps" that are used for cancer patients. Also, I am using Low light therapy caps every other day we will see if it helps. I also found that Apple Cider vinegar and water dripped in areas help.

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