Recently Diagnosed with Lichen Planopilaris (scalp)

i read a research article that said many people with OLP are deficient in Folate. Has anyone tried upping your folate?

good morning. I was so excited to see this new group chat. I am a 58-year-old female who is newly diagnosed. I have been suffering with symptoms for about a year. I respond best to the clobetasol foam to help with the itchiness. But as you all know sometimes it has become unbearable! I plan to start my treatment within the next few days. I did have my preliminary blood test yesterday. I will start on doxycycline and hydroxychlooquin i am nervous but i feel i need to start something... has anyone had any success with any natural alternatives such as any oils or acupuncture?

Hi. I am a 50 year old make who was just diagnosed with LLP lichen planopilaris. The itching on my scalp started probably late Spring last year (2021) but didn't think much about it. Have not seen much hair loss, but maybe some thinning in a couple spots. The dermatologist did a biopsy and just got the results last week. She had me take Zyrtec to help with the itching during the two weeks while waiting for the biopsy results and it seemed to help with ichyness. Upon biopsy results she started me on topical clobetesal, told me to use tea-tree shampoo and daily fish oil and turmeric supplements to help with inflammation (although I've seen a couple mentions in this discussion about not taking turmeric and I'm curious why).

I've had type 1 diabetes most of my life. The dermatologist said possible options to come might include oral steroids or steroid injections. I know from past experience that oral steroids make my blood sugar out of control, so I can't do them long-term.

Trying to think what might have caused this. I went mostly vegan in Sep 2019, but eat more meat in the last year than I did in the first year or so. I have not gone back to regular milk since 2019 (I mostly drink almond or sometimes soy milk) but do still eat some cheese. In Dec 2020 I got Bells Palsey which lasted 3 to 4 weeks, and was given a 4 day dose of steroids, and a week of an anti-viral. I also started high blood pressure around that time, and started on Lisinopril in Jan 2021 and then a combo of Lisinopril and hydrochlorothiazide around March. I have stopped taking those prior to going to the dermatologist thinking they might have something to do with the itching.

I'm overwhelmed right now, and would like to do what I can diet-wise to control this as much as possible. Of course there is stress in my life especially the last couple years, which could be the cause of a lot of the stuff I've mentioned. But with a teenager, getting rid of stress is easier said than done.

I'm 41, and I've suffered from LPP for 22 years. Over the past year or so, I finally figured out ways to DRAMATICALLY improve this condition, but I've been hesitant to share because I was afraid the LPP would come back. Well, I've been almost entirely clear for a year, so I want to help others cope with this horrible disease.

First, my LPP was really bad. Intense pain and swelling every day for years. Caused depression. Couldn't even touch my scalp. Just constant burning. Nothing worked; steroids, plaquinel, cyclosporin, methotrexate, minocycline, doxycycline, steroid injections, nothing. I felt like a tried everything. Major hair loss and scarring. Big bald spots on the top and sides of my head. I felt hopeless.

About 3 years ago, I convinced my derm to try low dose naltrexone (LDN). There was a study published that showed promise for this against LPP. I take 3 mg a day, and this helped. It improved the LPP, but it was definitely still there. I still had to use clobetasol every day. I also adopted a gluten-free diet. This also seemed to help, too.

About a year ago, I think I finally figured something out: chlorhexadine gluconate soap. I wash my hair, every day, with a combination of Pureology shampoo mixed with chlorhexadine gluconate soap. My LPP is pretty much non-existent now. All I feel are little tickles. No pain, no more hair loss. I haven't used clobetosol in months. My derm can't believe it, but says the redness is pretty much all gone (not to mention the swelling, pus, scarring, etc!).

To summarize, I'm not sure if it's one thing that has improved my LPP or a combination of a bunch of things. Therefore, here's everything I do to control my LPP:

-low dose naltrexone, 3 mg/day

-Lexapro, 20 mg/day for anxiety

-wash hair with combination of chlorhexadine gluconate soap and shampoo (Pureology) every day.

-Aussie moist hair conditioner

-Minoxidil (low alcohol) solution, applied every night.

-Gluten-free diet, avoid processed foods.

-The only beer that doesn't bother me is Bud lite, for some reason. Wine/liquor is okay.

-Rinse hair with freshwater immediately after swimming in a pool or ocean.

-Daily exercise.

-Try to avoid stress as much as possible.

-Keep blood sugar up by eating frequently (helps with anxiety).

I hope this helps someone!

i have recently been diagnosed with lpp im wondering if i had it over 2 yrs ago and yet my gp said it was allegies ir bites on my lower back legs as i still get them hut now its onl my scalp and losing hair

dermatologist out me on plaqunel as well as zatamil

so frustrating don't like going out as my hair is terrible

any luck with u

Hi, just discovered this forum and all though I wouldn't wish this on any one it's great to chat to fellow sufferers. I lost my eyebrows some years ago and noticed that I was also losing hair on my legs and underarms. about ten years ago my hairline very gradually began to recede but so slowly it didn't seem to be an issue. I put it down to age. Last January following my 2nd Covid vaccination I broke out in an awful rash on both my legs and upper arms. This was absolute hell. It lasted weeks, I had numerous lotions and potions all given following telephone calls, I couldn't even see a GP let alone a dermatologist! During this attack my scalp began to burn and itch and my hair began to fall out and recede. To cut a long story short I eventually got to see a dermatologist, in fact I've just seen my third, they have all said my rash, body hair loss and my scalp are all connected, and they have all said its Lichen Planus. I've been waiting eight months for a biopsy! and they have now decided to start me on Hydroxychloroquine without the biopsy results. I've researched this drug and have decided not to take it. Has anyone out there had any side effects from it? I was to take 400mg daily, indefinitely. I have booked an appointment for acupuncture next week, feeling much more comfortably taking that path. I'll let you know how I get on.

i haven't been diagnosed with LP yet but its looking likely. I have biopsies being taken in a couple of weeks. I am a 36 year old woman who has had long thick blonde hair for years and have lost about half of it in the last 6 months. I am really reluctant to go on steroids or anti malaria tablets and seeking alternatives...

I found Mielle Rosemary and Mint hair oil a few months ago, before i knew this was this serious and it really helps soothe my scalp. I even noticed some hair regrowth in the front of my hairline. I was given Betacap steroid liquid to for my scalp but i feel like that makes it worse and stopped using it. I leave the oil on my hair at least 3 times a week overnight and its been really soothing. I would recommend it, its the only thing that has brought me any comfort.

Hi all. Just found this thread and hoping for help and advice if possible.

Suffer from typical male pattern baldness (thanks dad)...but 4/5 years ago started to see patchy hair loss above ears. However, had hair loss on face over last ten years. After a back op I was on pain medication for the same amount of time and do wonder if it is linked. Anyway, pre-covid I had photos taken, had steroid injections etc. Covid killed any treatment, but finally this year got an appointment again at the hospital. This led to a recent biopsy and confirmation of LPP. Devastating obviously. I do not have any other typical LPP symptoms...no real itching other than what I have had my entire life when suffering with hayfever. Just hair loss. No redness, no skin issues on my scalp at all. My hair loss feels more like FFA from research but doctor says LPP. Back at the start I was given steroid creams etc too. Didn't really do anything. I take finasteride 1mg per day - has anyone ever taken more as I have read studies where 2.5 - 5mg daily has helped in some cases? Also, take oral minoxidil and use topical minoxidil. From the photos I have taken over last 4/5 years plus the photos that were taken at the hospital in 2019 the doctor says that there is no noticeable progression - good perhaps. However, after the biopsy results I feel like it is worse. I look back at the photos however and it really isn't. I just seem to be more acutely aware of it now so am focussing on it a lot more. I've read some comments about chinese herbs and acupuncture - has anyone got more specific detail on how to explore this please? Also, has anyone thought about SMP and used it to mask bald spots? Has anyone undergone a hair transplant if their condition has stabalised? These are two things I am thinking of. It is not like I can simply shave my head as the bald patches on the side of the head would stand out. Any help, guidance and advice would be really appreciated. It's really depressing isn't it? And having it dominate your thoughts (and actions) just makes it worse - literally.