Lichen Planopilaris...newly diagnosed

@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?

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.

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.

“eyes” not “eye”

@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?

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.

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.

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.

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

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?