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 group.

@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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@amandajro

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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Yes, I have heard of it but not tried it. Will certainly give it a try. Thank You! Planning to also start an anti-inflammatory diet. I truly need to eliminate some foods I am allergic to but “cheat”. I also forgot to mention I do use a hairmax laser. Always looking to try new things that might help and I try to be optimistic. thanks again.

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@clora

Yes, I have heard of it but not tried it. Will certainly give it a try. Thank You! Planning to also start an anti-inflammatory diet. I truly need to eliminate some foods I am allergic to but “cheat”. I also forgot to mention I do use a hairmax laser. Always looking to try new things that might help and I try to be optimistic. thanks again.

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@clora is there a specific diet you plan to follow?

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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 have 4 autoimmune skin diseases and recently the biopsy results showed positive for LPP. I also have Hashimoto's Thyroiditis and sjorgen's syndrome. I am thinking making I have a Mast Cell colection of diseases. Has anyone else been thinking about this? I also have iron deficiency anemia that gets really bad.

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@amandajro

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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My only caveat is if you already have iron deficiency amenia, do not take tumeric. It chelates iron from yout body.

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Hello,

I too have lost hair over the years but in the last year started to notice visible bald spots on my scalp.
Dermatologist just sorta blew me off as Alopecia. In desperation I set up an appointment at a Hair
Transplant clinic in another city 3.5 hours away. The doc there was great…..but after looking at my scalp
said he needed to do a biopsy. Two weeks later his early diagnosis was true….lichen planopilaris.
He said I needed to see Derm. Went to a new one. This is my new routine, just started less than a week ago.
1/2 tablet daily of Minoxidil 2.5mg. One Dutasteride capsule 5 days a week, 0.5mg. Topical Mometasone Furoate Solution USP 0.1% 2 to 3 times per week.
Will this help?? Gawd, I hope so. Hair transplant doc said if my dermatologist releases me (whatever that means?) I may be able to have a transplant. But the LPP can still come back.
I am very active and do own a wig but DO NOT want to wear one. Looking for any and all advice from you folks in this very sad little club
Thanks you
Marlene

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