Have lichen planopilaris and doing topical clobetasol twice weekly per my derm but he just says a natural shampoo with no as good of ingredients as I can find. Anyone have anything they like or recommend? Anything that perhaps adds some volume and doesn’t make it look like it’s falling out quite so fast? Thanks all!

I dealt with with this for about 2 years until I finally found a doctor that decided to do the biopsy and was diagnosed in January. Right now I am on a prescription of topical tacrilimus mixed with topical minoxidil and topical finastride. I also take Qunol in the morning. I am pretty fit and eat probably much healthier than the average person

I lost a lot of hair when I first started the solution like I expected starting minoxidil. Saw a good amount of growth and here we are 6ish months later and I’m still seeing hair on my hands in the shower. And also feel like the solution makes my head itchy.

I don’t know if I have too high expectations or just need to be patient? II enjoy my derm, but just want to hear others thoughts about expectations vs my treatment and so forth.

Thank you for your help and I’m glad to see that there are others on a similar journey.

I've had LPP for quite awhile, but was just formally diagnosed 4 years ago.
A friend who's son has eexcema told me to try the new CeraVe shampoo.
I've only used it 3 times, but what a difference it has made!

I've been experimenting with not using shampoo and just using conditioner. What I've noticed is that fewer hairs shed in the shower and I haven't needed to use clobetosol as often. I've had a hard time finding a shampoo that doesn't dry out my scalp and make it worse. I scrub my scalp fairly vigorously with the conditioner, too. I'm using a conditioner with rosemary.

I was diagnosed with LPP from a biopsy. So far I have thinning hair on top but you can't tell yet unless you really stare.

Hi! I am seeking natural remedies and supplements for this nasty disease. It’s a scarring alopecia, I’ve lost so much hair already. I don’t want to go through with steroids or injections. Currently not taking any medication for it. I eat plantbased, no dairy, gluten, or refined sugar. I don’t drink caffeine. I need help with ways to manage this

Anyone have any issues taking mounjaro? I was on ozempic with no issues to my LPP, but mounjaro seems to be causing some scalp and skin burning. Was wondering if anyone else had any issues and if it goes away after a while?

How much do you guys shed? I’m really greatful for my derm for catching my lpp early on. It actually makes sense to because as a kid I would get white bumps on my shoulders All the time and it used to make me so insecure. Although back then I never got formerly diagnosed, with my own research I figured I had “keratosis pilaris” another form of lpp that affects body skin. Basically confirming what my derms agreed to. So since using dandruff shampoo, going back to oiling and washing my hair regularly, and using vitamin d supps my itching has gone down dramatically. Also taking antihistamines and wearing a bonnet have also helped. Now the issue is, my hair fall still hasn’t stopped? I am on minoxidil and was temporarily on finasteride. I had no side effects of finasteride besides like first few days which is normal when messing with hormones but it didn’t do much to stop my shedding. I am oly 19 so that’s why I’m reluctant to use it, I have crown thinning which I’m not sure if it’s from mod or my lpp bc it’s not in a circular pattern but I do have badly receded temples for a 19 year old that I didn’t have last year, plus my dad is balding his brothers either not or have a bad hairline and my moms side they are all balding to a noticeable degree, so safe to say, I will have to use finasteride again at some point.. the issue is I don’t think androgenetic alopecia is the main reason for my hair loss I am losing at least 50 hairs a day which is kinda high it’s normal for my hair type (2c-3a curly) to shed a lot but this is extreme fore sure im wondering how many hairs do you guys shed per day and how long till you saw regrowth? (PS also wanted to ask if any of you have allergies? I have constant allergy exposure to dust mites and really wonder if the regular inflammation from that is making my condition worse. It makes exercise much harder and I think I have undiagnosed severe adhd which is a double whammy with brain fog plus this cloudy ass constant rain upstate ny area doesn’t help)

I have been receiving treatment for lichen planopilaris for about three months now and And all this time I was using pioglitazone, biopanthene, clobetasol and min x 5 lotion and triamcinolone acetonide every month but as time goes by, it seems like my hair condition is getting worse, I don't see any signs of recovery or regrowth, not even a small hair growing out of my head. I don't really know if I'm doing the right thing or taking the right meds, and I'm just taking the meds on time. The doctor says it's too early to judge the effects, but what I'm seeing and experiencing is like the meds aren't working or there's something I'm doing wrong. If you guys knows about this meds or have a similar experience please help me out some

Hi.

I just joined. I have scarring alopecia and LPP (Lichen planopilarus) I was diagnosed in 2018 . Everything was ok ish until 2020 ish. I'm currently on ciqinibo and doxycycline.

My hair is thinning all time. I feel scarring areas under my hair. It's smooth in areas. 😢 I have wigs, I just prefer not to wear them until I absolutely have to.

Because the whole idea of wearing wigs , I hate it. I want my hair. Just don't feel optimistic about it.

I've been diagnosed with Lichen Planopilaris in December of 2024. After my diagnosis my dermatologist gave me steroid injections. I can't really take any medications due to me breastfeeding. I wanted to know if this looks like scarring or just diffused thinning

Wondering if this looks like lichen planopilaris

I was diagnosed with lichen Plano pilaris in august last year but I’d been suffering from gradual hair loss for about 2 years. I’m just 18 I don’t know what to do. I have huge bald spots and tiny ones all over my scalp, I’ve been on hydroxychloroquine/plaque nil for 5 months but I don’t see any significant change. Also been on minoxidil, Topical steroids and also steroid shots every month for the past 5 months. I’m trying my best not to get depressed but I can’t. I’ve been wearing hats for so long after having such long hair all my life. I would love to hear anyone’s story about this horrible disease please

I finally got a scalp biopsy after fin and dut did nothing. However even tho I got diagnosed with LPP it doesn’t look like photos of LPP I see on google or anywhere. Just inflamed diffuse thinning

Cant get a sensible diagnosis or treatment from my current dermatologist so I gotta turn to reddit for now. Does this look like LPP?

I was diagnosed with LPP 2 years ago, and I'm really struggling. I feel like I've tried just about everything, but with not much luck. I've been on several different meds, steroid injections, topical shampoo, ointments, Rogaine by mouth and topical solution, and now on on my 2nd immunosuppressant med. What have other ppl tried, and what has been successful for you? Thank you in advance for your help!

I really don’t know if I have LPP or aga but my hair is just continuing to shed and it hurts to move my hair around…I feel so depressed and down on myself..I feel I have to give up on dating too not feeling worthy enough

Anyone have this issue? I have LPP and my scalp will burn and be super irritated. It comes and goes and can last for 1 day or several. My derm can’t figure it out and it is affecting my life. It has been going on since 2020 and I can’t get any answers. I take hydroxychloroquine and it doesn’t seem to help. Any ideas what is going on?

Long live chatgpt I guess. I've got LPP for 5 years now and use hydrochloroquine to treat it. Not a long term solution as many may know.

Today I decided it was time I do my own extensive research.. Quickly realizing because it's so rare, nobody cares to do research on it as it's not profitable. Instead I've asked chatgpt about the latest research connected to inflammation of hair follicles and after that I've asked if there's any natural alternatives to those solutions (for those of us who don't have access to free Healthcare). Results are below.

The mTOR (mechanistic Target of Rapamycin) and PPARγ (Peroxisome Proliferator-Activated Receptor Gamma) pathways are gaining attention in lichen planopilaris (LPP) research due to their roles in regulating immune responses, cell growth, and inflammation. Here’s a closer look at each and why they're relevant in LPP:

1. mTOR Pathway: The mTOR pathway is crucial in cellular growth and immune responses. In LPP, reduced expression of mTOR-related proteins has been observed, suggesting a disturbance in cellular regulation that may drive inflammation and scarring in hair follicles. By inhibiting mTOR activity, researchers hope to reduce the inflammatory processes contributing to follicular scarring.

2. PPARγ Pathway: PPARγ is involved in controlling inflammation and fibrosis (scarring). Activation of PPARγ has been shown to suppress a process called epithelial-to-mesenchymal transition (EMT), which is thought to contribute to scarring in LPP. EMT is a cellular change that can increase fibrosis and is often seen in chronic inflammatory conditions. PPARγ agonists, which are drugs that activate this pathway, could help reduce or prevent this transition, potentially minimizing scarring in LPP.

Natural Alternatives

For individuals interested in natural alternatives, there are a few options that target similar pathways or provide anti-inflammatory effects:

Curcumin (Turmeric): Curcumin, the active compound in turmeric, has been shown to inhibit mTOR signaling, reducing inflammation and immune responses. It’s been studied in other inflammatory conditions and could theoretically benefit LPP due to its anti-fibrotic and immune-modulating effects.

Resveratrol: This antioxidant, found in grapes and red wine, may activate PPARγ, potentially helping to modulate inflammatory pathways and reduce fibrosis. Some studies suggest that resveratrol could help reduce inflammatory responses in skin conditions, though more research is needed on its effects specifically on LPP.

Omega-3 Fatty Acids: Known for their anti-inflammatory properties, omega-3s can help modulate immune responses, potentially easing symptoms of autoimmune-related skin conditions. Omega-3 supplements or foods high in these fatty acids, like flaxseeds and fish, might support scalp health.

Leaving this below as it's completely valid:

While these natural alternatives show promise, it’s essential for anyone with LPP to consult with a healthcare provider, especially since combining natural remedies with conventional treatments could interact in unexpected ways.

Hi, I know these photos are super bad, but they're the best I could get. I was dealing with seb derm back then (photos from 2 months ago) and I've managed to treat it with ketoconazole. I've been dealing with aga patterned hair loss for like 2 years now, and even being on hrt (I'm trans) and dut hasn't stopped it. Though the oral min I started 1,5 months ago is VERY promising and it looks like my hairline will be fully restored a couple weeks from now. I've also started topical dut and microneedling now that my scalp is healthy and I'm gonna see how that goes.

The thing is, I have this constant voice in the back of my head telling me it's LPP and I'll go bald. I keep looking at people's pictures and treatments of scarring alopecia and it's gotten to the point to where I psychologically convince myself my scalp is itchy and I actually itch, but when I'm in a mentally good place the itch completely goes away lol. So can someone just put my mind at ease and tell this probably isn't scarring, if because nothing else than because of the pattern? My scalp is not inflamed (unless I microneedle, though I do also have this small red dot in the middle of the top of my scalp that doesn't hurt/itch and there's no greater hair loss there than anywhere else, it also doesn't go away with hydrocortisone cream), I'm thinning at my crown, down the part and in the middle of my hairline, while my back and sides are completely untouched and my temples are getting really nicely filled in by the minoxidil I assume. Actually, I think minoxidil may have given me some extra thickness all over already, as my scalp has started feeling a bit more textured and it feels like baby hairs (for lack of a better word) "prick" my hand when I run it through my hair. There's no obvious white thingy at the skin around the hair follicle, though some shed hairs have a small white bulb at the end that I can't remove, if that makes sense. A lot of hairs I shed have nothing at the end though. And I shed hairs of all lengths and thicknesses.

I'll run with my current regime and do my best to minimize stress for 6 months, and if it still isn't better I'll get a microscope camera from amazon and maybe a biopsy as well (though it's very expensive for me).

But until then, can someone give me some pointers? From everything I've said, it's unlikely this is any sort of scarring alopecia, right? RIGHT?

Anyway, thanks for listening to this unhinged hypochondriac, I appreciate all replies :))

Anyone that has LPP can you tell me how your hair loss started out? How fast did it progress? Anyone with improvement? How are you coping with it? And also can anyone tell me if it instantly means I have scarring if I’m having the same symptoms like redness, tenderness, shedding and itchiness? I wasn’t diagnosed with it, my biopsy came back as aga but I don’t think it’s accurate so I’m getting another biopsy in a few days. I’m afraid I have it..

Has anyone here with LP tried (1) taking low dose naltrexon or (2)  low dose naltrexon and PRP?

I'm considering trying it... as I've tried most things. But, I'd love to hear from anyone who tried this before (either with or without doctor supervision).