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.

@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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@ninjala06 Welcome to Mayo Clinic connect, a place to give and get support.

You were diagnosed with lichen planopilaris 5 years ago and you were prescribed hydroxychloroquine. You did not want your eyes dilated so you went off of the medication but you will likely resume due to hair loss.

Other than hair loss, may I ask what other symptoms you have at this time?

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@erikas

@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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Not my provider: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7090134/ trial results this was for the light cap. The cold cap was something I thought would help with the pain since cold water improves the pain for a few min. at least.

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I have been on Hydroxychloroquine for a year and using Clobetasol. My Dr. just switched to Doxycycline Mono 2x a day and added over the counter 1,200-2400mg of N-Acetycysteine and Zyrtec nightly. We will see what happens.

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@fdixon63

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

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I’ve had lichen planus on my gums. A dentist gave me injections (wish I knew the name … I think it was some sort of steroid) in my mouth which cleared it, as well as the psoriasis all over my scalp and body, within a week but the effect lasted only a few months so I went back to her and asked for another set of injections. She told me this was not a permanent solution and referred me to a dermatologist who put me on Methotrexate which also cleared my lichen planus and psoriasis eventually, till I reduced the dosage. Long story … but going back to the lichen planus, in my case staying off mushrooms has helped. Any time I eat mushrooms- even have a lick of mushroom gravy – my gums flare up.

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@siroisjli

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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Is the low light therapy hat still helping? If so, which one do you have?

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@kssams

Is the low light therapy hat still helping? If so, which one do you have?

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Hi @kssams, I wanted to welcome to Mayo Clinic Connect. You came to a great place to find answers. Would you be willing to share your story? Were you diagnosed with Lichen Planopilaris?

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@siroisjli

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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@siroisji unfortunately apple cider vinegar taken in any form, internally or externally irritates my scalp and stomach, although others have had so much success with it. I am interested in the low light therapy hat – do you need a prescription for it or can you just buy it somewhere? My scalp is driving me crazy with itchy scales.

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@amandaburnett

Hi @kssams, I wanted to welcome to Mayo Clinic Connect. You came to a great place to find answers. Would you be willing to share your story? Were you diagnosed with Lichen Planopilaris?

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@amandaburnett up till now I have just assumed the scales and itching on my scalp was from psoriasis and now I am wondering if it is lichen planopilaris! My dermatologist has never mentioned it. I have lichen planus which seems to to be under control with Methotrexate but even with Stelara 90ml Injections my scalp is still itchy and scaly. Tried every kind of shampoo and lotions – naturopathic and allopathic but no results. I am going mental with the itching and scaling/flaking! I would like to know how to acquire that low light therapy hat in Ontario!

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@rashida

@siroisji unfortunately apple cider vinegar taken in any form, internally or externally irritates my scalp and stomach, although others have had so much success with it. I am interested in the low light therapy hat – do you need a prescription for it or can you just buy it somewhere? My scalp is driving me crazy with itchy scales.

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Sorry, it doesn't work for you. I do have to add quite a bit of water to help. Kiierr is the co. that I bought the cap from, pricey and not sure if it does anything but the report I posted showed results. Make sure you don't use too much and follow the directions. My Dr added NAC to my care. We will see if it helps. All my support and I sure hope someone can help us.

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@siroisjli

Sorry, it doesn't work for you. I do have to add quite a bit of water to help. Kiierr is the co. that I bought the cap from, pricey and not sure if it does anything but the report I posted showed results. Make sure you don't use too much and follow the directions. My Dr added NAC to my care. We will see if it helps. All my support and I sure hope someone can help us.

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@siroisjli thanks! What’s NAC? Salt?

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@siroisjli

Sorry, it doesn't work for you. I do have to add quite a bit of water to help. Kiierr is the co. that I bought the cap from, pricey and not sure if it does anything but the report I posted showed results. Make sure you don't use too much and follow the directions. My Dr added NAC to my care. We will see if it helps. All my support and I sure hope someone can help us.

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@siroisjli I just went into the Kiera.com website and the description addresses only hair loss. No mention of it being goos for lichen planopilaris. Have I got the correct website?

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Hello, it's not on the website but in the study, I found and mentioned in a posting. Always check w/your Dr. they some are aware of this option.

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