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.

Interested in more discussions like this? Go to the Skin Health Support Group.

@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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@amandaa

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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@rashida

@siroisjli thanks! What’s NAC? Salt?

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N-Acetylcysteine my Dr. put me on over the counter.

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@rashida

@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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@tsafer

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

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I was diagnosed in January 2021 with 2-biopsies. I had been losing hair for a few years and my original Derm did not feel I needed it as he would refer to my scalp burning as being “angry” due to many chemical allergies. Obviously this was wrong. I am not a candidate for Placquenil. My new Derm had me start with Doxycycline mono 100mg, twice daily for 3 months. Just recently it was reduced to 1-capsule daily. I was also given Clobetosol foam PRN. which temporarily calms the area. Since reducing the Doxy I have had more hair loss. Waiting to hear from my doc. Unfortunately from what I have read and been told there aren’t too many options for me.

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@clora

I was diagnosed in January 2021 with 2-biopsies. I had been losing hair for a few years and my original Derm did not feel I needed it as he would refer to my scalp burning as being “angry” due to many chemical allergies. Obviously this was wrong. I am not a candidate for Placquenil. My new Derm had me start with Doxycycline mono 100mg, twice daily for 3 months. Just recently it was reduced to 1-capsule daily. I was also given Clobetosol foam PRN. which temporarily calms the area. Since reducing the Doxy I have had more hair loss. Waiting to hear from my doc. Unfortunately from what I have read and been told there aren’t too many options for me.

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Hello @clora and welcome to Mayo Clinic Connect. I am sorry to hear that you are struggling and not seeing improvement.

I found this article on lichen planus that may be of interest to you as you explore where to go from here:

– Turmeric – A new treatment option for lichen planus: A pilot study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961895/
Like everything, it would be recommended to discuss with your doctor first. Have you heard of Turmeric before?

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