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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.

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sophie7 | @sophie7 | Jul 18, 2024

That is awesome you can't tell you have hair loss 😊. What are all the supplements you take? Anymore tips are greatly appreciated.

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jwfletcher | @jwfletcher | Aug 1, 2024
In reply to @clora "I was diagnosed in January 2021 with 2-biopsies. I had been losing hair for a few..." + (show)
Profile picture for clora @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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Dear friend, I am sorry about your hair problems. I believe you are a woman like myself, and our hair is our treasure. You have my sympathy. I also have chemical allergies, and they have taken over ever area of my life, including hair, clothing, drugs, medical equipment, etc. Do you have similar problems? My doctors tell me there are no treatments or ways to reverse them. Is this the same for you? I don't know how I will get through life this way. Every day is such a struggle. Best of luck with your hair and your health. Sincerely, Julie

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kikicampese | @kikicampese | Feb 3 3:24pm
In reply to @latenac "What helped the most for me when I changed dermatologists is that she has a plan...." + (show)
Profile picture for latenac @latenac

What helped the most for me when I changed dermatologists is that she has a plan. She said, "I generally do this treatment for a year, if things look healed and there's not further inflammation, I cut back on the drugs 50% and then at 2 years if things still look good I take you off of the drugs altogether." So don't hesitate to insist on a plan and some way of judging how things are going.
Everyone told me how rare this disease is but both dermatologists in Vermont have multiple patients with it and my co-worker has it along with the exact same bald spots I do. She's been in remission for years without any need for drugs. So it gives me hope.

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Has her loss stopped? Any regrowth or attempts at getting any?

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latenac | @latenac | Feb 4 7:26am
In reply to @kikicampese "Has her loss stopped? Any regrowth or attempts at getting any?" + (show)
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Has her loss stopped? Any regrowth or attempts at getting any?

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The hair loss seems to have stopped for me. The hydroxy dosage was cut in half but I had a brief eye scare over the summer so she switched me to doxycycline which did not help. Fortunately the eye scare came to nothing and I was put back the half dosage of hydroxy. Everything seems ok now. I have had some itching but not bad and it seems to happen when I haven't been taking allergy medicine. So I'm wondering if Zyrtec also helps things. Has anyone else had something similar happen?

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jigster1 | @jigster1 | Feb 4 8:34am

I was diagnosed with LP probably 3 years ago. Always had fine hair but started noticing very bad thinning and
bald spots.
My docs have me on dutasteride and minoxidil pill (cut in half).
Seems to have helped a lot but the doc said nothing will bring the hair back from LP.
I grew up with eczema which has pretty much disappeared. Also have Type 2 diabetes.
It really is depressing but just have to live with it I guess.

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cloe1971 | @cloe1971 | May 28 3:16pm

Ciao, mi è stato diagnosticato il lpp 5 anni fa, ho già perso molti capelli e ho avuto alti e bassi.
Dopo avere fatto iniezioni di kenakort ed usato clobesol in crema per un po' di mesi sembrava si fosse fermato poi circa un anno fa è ripartito più agguerrito che mai. Sto continuando con le iniezioni e con la crema ma non cambia nulla, non so più che fare.
Sono molto avvilita

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jenn1500 | @jenn1500 | Jul 16 12:57pm
In reply to @nets2020 "I was diagnosed with lichen planopilaris 13 months ago by my dermatologist during an annual skin..." + (show)
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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.

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Hi, I’ve had Lichen Planipolaris for 2yrs now. The best shampoo and conditioner I feel that doesn’t irritate the scalp is Vanicream. Anything hypoallergenic is good. I stopped dying my hair as well because I know it will irritate my scalp. Also, keep your scalp covered from the sun. Sometimes I forget to do that and my scalp gets so inflamed. Hope this helps.

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jenn1500 | @jenn1500 | Jul 16 1:00pm
In reply to @latenac "The hair loss seems to have stopped for me. The hydroxy dosage was cut in half..." + (show)
Profile picture for latenac @latenac

The hair loss seems to have stopped for me. The hydroxy dosage was cut in half but I had a brief eye scare over the summer so she switched me to doxycycline which did not help. Fortunately the eye scare came to nothing and I was put back the half dosage of hydroxy. Everything seems ok now. I have had some itching but not bad and it seems to happen when I haven't been taking allergy medicine. So I'm wondering if Zyrtec also helps things. Has anyone else had something similar happen?

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Hi, yes I agree. I take Zyrtec for the itching as well. It does help calm the itching. I notice in the summer time if my head isn’t covered my scalp gets very itchy. I think because of the heat. Not sure. Wearing a hat or covering with a scarf can protect my scalp from irritation.

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nancyp718 | @nancyp718 | Sep 7 7:47am

I was just diagnosed with LPP and I am looking for support!

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nancyp718 | @nancyp718 | Sep 8 3:01pm

I was just diagnosed and had first treatment of steroid injections and topical steroids.

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