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.

@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.

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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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@siroisjli Welcome to Mayo Clinic Connect, a place to give and get support.

You are diagnosed with Lichen Planopilaris and looking for, "cold cap," that are typically used for cancer patients. You are also using other treatments that are working for your symptoms. You have already connected with members like @tsafer @fdixon63 and members @ginyer @lorrainechavez @nets2020 @siroisjli @pat68 @lfj9487 @joy4trees @fdixon63 also experience with this topic.

May I ask if your provider informed you of the therapies or did you find the information elsewhere?

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Shortly after a biopsy revealed oral Lichen Planus, I developed Aquagenic Pruritus and then 2 years later Cold Pruritus. After 3 years of no relief for the Oral LP, My immunologist started me on Hydroxychloroquine…my gums healed very quickly…after 7 months, it did nothing for my other itch issues. So he took me off…5 months later, still no oral issues. As for my other itch issues, I have found that Beta Alanine works for the itch. I belong to a FACEBOOK group for AP and someone there discovered this. Last month the 1st medical article was written on the subject by a pair of Stanford Ped Dermatologists. I take 750 mg before getting out of bed, wait 15 mins and no itch on a cold morning. I take every 4 hours as needed. I take 150 mg 30 minutes before showering and this works best late in the day.

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Edit. I take 1500 mg before showering…

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I was diagnosed with LPP about 3 years ago. In that time, I have used Clobetasol each morning, occasional steroid injections on the scalp and oral doxycycline. I had Covid in October and since then have flared and cannot get it under control. I’m now noticing a lot of shedding when I wash my hair. I would welcome any suggestions on anything that has helped anyone.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7090134/ After reading this I purch. a Kiierr hat along with all the meds you are all taking. I wear it every other day along with antiinflamation diet and have seen improvement. The challenge is we all are different and wish this could get figured out. The Clobetasol gives me a headache and I use Apple Cider Vinegar and water for the pain/itch. Everyone, please keep sharing I have noticed more cases being shared. Hope and prayers

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@bjf63

I was diagnosed with LPP about 3 years ago. In that time, I have used Clobetasol each morning, occasional steroid injections on the scalp and oral doxycycline. I had Covid in October and since then have flared and cannot get it under control. I’m now noticing a lot of shedding when I wash my hair. I would welcome any suggestions on anything that has helped anyone.

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@bjf63 Welcome to Mayo Clinic Connect. A place to give and get support.
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You are newly diagnosed with LPP, you are taking Clobetasol and steroids occasionally, and you recently had COVID-19. Since COVID-19 you are not able to get your LPP under control and your hair is shedding more than normal. You are looking to connect with members for suggestions and/or support.

Members like @tsafer @fdixon63 @ginyer @lorrainechavez @nets2020 @siroisjli @pat68 @lfj9487 @joy4trees @fdixon63 have experience with this topic and may be able to comment.

I'm wondering if you had shedding before COVID-19 and if it is a known side effect of LPP and/or the medications you are currently taking?

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@erikas

@bjf63 Welcome to Mayo Clinic Connect. A place to give and get support.
.
You are newly diagnosed with LPP, you are taking Clobetasol and steroids occasionally, and you recently had COVID-19. Since COVID-19 you are not able to get your LPP under control and your hair is shedding more than normal. You are looking to connect with members for suggestions and/or support.

Members like @tsafer @fdixon63 @ginyer @lorrainechavez @nets2020 @siroisjli @pat68 @lfj9487 @joy4trees @fdixon63 have experience with this topic and may be able to comment.

I'm wondering if you had shedding before COVID-19 and if it is a known side effect of LPP and/or the medications you are currently taking?

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Hello, thank you for your reply. I did have minimal shedding before Covid. Initially, when diagnosed and even afterward, I still had minimal shedding but about a month or possible 2 months ago, I started noticing more hair in the drain when washing. My dermatologist has prescribed a combination of minoxidil and finesteride (spelling) from a compound pharmacy that I use at night and the clobetesol in the mornings. I take a multi-vitamin, a 5,000mcg biotin and 50mcg of vitamin D3 daily. I’m open to anything else to try and wanted to connect with anyone that has been diagnosed with LPP since it is relatively rare. It helps just to know there are others that are going through the emotional roller coaster that I am.

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I was diagnosed about 5 years ago and perscribed hydroxychlorquine, and a topical cortisone to use during flareups. Like you, my dermatologist noticed this in my yearly checkup. I stopped taking hydroxychloroquine after a few weeks because I did not want to have my eye dilated once a year (suggested by eye doctor when one is on this med) after I learned I had closed angle glaucoma. I had cataracts removed and that solved my problem. I am likely to resume the hydroxychloroquine because my hair loss is worsening.

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@ninjala06

I was diagnosed about 5 years ago and perscribed hydroxychlorquine, and a topical cortisone to use during flareups. Like you, my dermatologist noticed this in my yearly checkup. I stopped taking hydroxychloroquine after a few weeks because I did not want to have my eye dilated once a year (suggested by eye doctor when one is on this med) after I learned I had closed angle glaucoma. I had cataracts removed and that solved my problem. I am likely to resume the hydroxychloroquine because my hair loss is worsening.

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“eyes” not “eye”

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