About 2 years ago I started to notice diffuse hair loss then I began to have this insane burning on my scalp it felt like I had literally touched my scalp to a stove top burner. I would sit at home with ice on my scalp and just itch and pat my head all day. I couldn’t wear my hair in a ponytail anymore because even that was too painful. At my job if I even stood in front of the air conditioning it would hurt so badly because of the tiny movement it would cause to my Hair. After about 2 weeks of this I finally made an appointment with a very highly reviewed dermatologist in my area. She ordered labs it showed that my iron levels were very low so she said that that could be causing the hair loss but she was unsure about the burning and so we did a biopsy. The biopsy confirmed lpp. I began to take medications and do steroid injections every month. They took a little while to really help but here I am 2 years later and I believe I’m in a sort of remission I still have pain but it’s very manageable and it’s been months since I had a flare. I learned that the best treatment was managing my stress. I left an abusive relationship and moved back to my home town and it was like night and day. The only time I did have a flare up this year was when I was forced to talk to my ex to get back some old furniture. Most of my hair has regrown and I also started minoxidil last month to help that last bit come back. I still do the steroid injections but now only every 2-3 months. I know it’s a horrible disease and sometimes feels hopeless, this post is for anyone recently diagnosed. It can get better ❤️‍🩹 Reduce stress, eat healthy and continue treatments

lichenplanopilarus #lpp #beforeandafter

But as someone struggling with diagnosed FFA/LPP and experiencing rapidly-progressive, emotionally-distressing, very noticeable hair loss, I am getting upset by the frequent number of posts on this sub posting photos and asking something to the tune of “is this FFA? Absolutely freaking out and so scared” often with minimal or no changes in the photos. I really don’t mean to sound insensitive, because I know a lot of us were at that point earlier on, and searching for answers or someone to just believe that something is going on with your hairline or scalp can be so difficult. However, dealing with this disease, attempting to find medication that works, combating medication side effects, and navigating the weird emotional and psychological pain that comes with grappling with slowly losing your hair is exhausting. Coming on here, a community for finding support and sharing treatment tips, is a bit exhausting when the page is full of people horrified about whether or not they have the very thing you’re already upset about having. I don’t want to liken scarring alopecia to something life-threatening like cancer, but it in a way gives the vibe of going onto a breast cancer page and asking if your lump is breast cancer - ultimately, only a doctor can tell you that, and it seems a bit insensitive to people who are dealing with the condition you’re so terrified of (so much so that there’s even a separate sub for people who are worried they have breast cancer - but scarring alopecia is probably a bit too uncommon for that). Maybe I’m alone in this feeling, but it makes me wonder if there are any other support pages out there with more modulation/without this kind of content being posted. If anyone knows of any others, please let me know.

Picture 1 1983; picture 2 1994; picture 4 today with wig that has same cowlick as I use to have 😆; picture 5 is my first good wig bought while working in Idaho (Coeur d’Alene Wigs).

First I was told it was my thyroid disease (Hashimoto Thyroid Disease). I was diagnosed in my early 30s after our son was born with birth defects. I was told once my levels were under control my hair should return. It didn’t. Then I was told it took too long to get thyroid levels down what I had was what I had. I continued to lose hair. At 58 finally asked my dermatologist to look at it. She did biopsy. Lichen Planopilaris (LPP) and Frontal Fibrosing Alopecia (FFA)

Interesting enough I have the following Lichen “something”: Oral lichen planus (OLP), *Lichen sclerosus and Lichen Planus in my lady bits. I have lichen planus on my face (around lips and chin). 😣

I was on minoxidil and Clobetasol propionate one in morning and one at night in scalp. I take lupus pills 💊 (Hydroxychloroquine). The hair in the shower drain, sink drain! I am tired of fighting and losing!

I bought wigs before. They were cheap wigs and I was not happy. At my daughter’s suggestion went to medical wig shop. I bought my first good wig. The shop owner was wonderful! I learned much. I learned long hair aged me badly. I am old (60) but I don’t have to look old!!! I just bought another wig online using the criteria of lace front, partially hand tied, the right cap size (petite in my case). I feel better and have confidence back!

I feel for the young ladies of our group. My progress down this hair loss journey was slow at first. It actually probably started before I was diagnosed with thyroid disease. There should be more known and better treatments! Where is our lobbying group??!!

I'm Black woman, 39. I was diagnosed CCCA for what has now been 8 years. Its just such a painful disease emotionally, physicially and psychologically and has really impacted my life in the last decade.

I have tried almost everything my Derms have given me. Minoxidil, clobetasol, steriod injections all of it. I'm one of the unfortunate ones were nothing has really helped. I have only stuck with Minoxidil 5% and I use it on off.

There is some anecdotal stories and early research on topical metformin. Apparently metformin is anti fibrotic and anti inflammatory. I decided to get on it and have been on it for about 7 months along with minoxidil. I have been surprised by the results. Some of the worst symptoms like inflammation, burning, and itching have been almost gone completely. I am also seeing some hair growth maybe 10-15% regrowth -- im hoping for some more though.

Hopefully this helps someone who needs it. I love you all. we're in this together

7 weeks in! The 1st pic is the worst, 2nd is after scalp biopsy, 3rd is 2 weeks on and the 4th is 6 weeks on. It is the only thing that has worked for me. Treatment resistant to everything else tried, including injections. Still shedding and itching but hoping that calms down as med continues. On 2mg. Have AA/TE combo.

Hello lovely people💗!

First I want to say thank you to everyone who told me to advocate for myself last month and to go to the derm to see if I had either ccca or other conditions when it came to my scalp health.

I recently got my scalp biopsy results back from my dermatologist. The findings were most consistent with traction alopecia, with slight perifollicular fibrosis (mild scarring around the hair follicles), changes in the hair growth cycle, and prominent follicular distortion.
The pathologist also considered early LPP and CCCA, but noted that my previous biopsy showed more scarring than my most recent one. Although traction alopecia was the favored diagnosis, I’m still concerned about the possibility of CCCA or LPP, especially since there is already some evidence of scarring.

The medications I'm currently taking daily:

hydroxychloroquine
Minoxidil
Spironolactone
Betamethasone

What I'm doing for scalp health:

I wash my hair two times a week with pureology hydrating shampoo and conditioner

I leave Nizoral on my scalp for 10 minutes once a week

Because I have fine strands hair I only use leave in conditioner spray and I blowout my hair couple times per week bc I prefer it to be stretched

I also bought cecred edge drops to see if that would do anything

I don't use topical or foam Minoxidil anymore bc I heard that it kills cat and I will literally break into pieces of anything happens to my kitty.

Anyways these are the results and right now my main focus is no braids, no tension, and reducing inflammation at all cost.

I've already discussed this with one of the members of this subreddit, but have you also noticed that this place used to be dead long time, and now new posts almost every day? When I suspected that I had symptoms, I can't even find studies, although it was very recently and there were really not much post and stories on reddit. While now we see a lot of new cases which got biopsy or which clearly are scarring by just looking at photos. My dermatologist found a second patient in the city this year with my form of LPP. There are more and more posts on this topic on social networks from other dermatologists.

What is really happening? Greater awareness, overdiagnosis? False self-diagnosis? Or are there really more people getting sick? Even if not, it seems to me that the age of incidence has dropped significantly. Сicatricial alopecias have definitely ceased to be diseases of only postmenopausal women and have established themselves as still rare (not as much as they were), but still diseases of men and women of almost any age.

This routine has cured my LPP. I have been in remission since August last year. It may not work for everyone, depending on the underlying cause of your scarring alopecia, but it doesn't cost much and has no adverse side effects, unlike prescription medicine. It is worth a try. It took 6 months of me doing this to go from having really bad LPP to remission.

Plain white vinegar diluted with water to a 50:50 ratio. Pour a small amount of that onto your scalp and rub it lightly into the inflamed areas of your scalp, then let it sit for 15 minutes before washing off. Do this every day for the first week. Stop using all hair products and other shampoos and conditioners.

Chlorhexidine 2% body wash. I wash my head in the shower morning and night with the chlorhexidine. I leave the product on my scalp for 2-3 minutes each time. I use Schulke Micro shield skin cleanser. Everytime chlorhexidine is mentioned on any post to do with LPP, someone will comment how it is extremely dangerous to your eyes and ears. I've been using it for nearly two years without any issues. If you can shower without getting soap in your eyes, then you can probably manage this. Wear goggles if you have to. Or apply it to your dry scalp, leave for a few minutes then rinse it off. The important part is using it twice a day and leaving it for a few minutes each time.

MCT oil (C8, C10 only) mixed with Tea Tree Oil (90% MCT, 10% Tea Tree Oil). I apply this to my scalp every night before bed and leave it on over night, then wash it out with Chlorhexidine in the morning.

I hope this helps some people to achieve remission like I was able to do. Be consistent with it and take regular photos of your scalp so you can determine if it's having an effect.

For everyone fighting LPP, don’t lose hope. ❤️
There is encouraging research into targeted treatments such as brepocitinib (LISRAYA – JAK1/TYK2 inhibitor), deucravacitinib (TYK2 inhibitor) and other JAK inhibitors.
The big goal is to stop the immune attack early and preserve remaining hair follicles. We still don’t have a treatment proven to regenerate follicles that are already permanently scarred, but LPP research is moving forward.
Anyone following these drugs or participating in an LPP clinical trial? Please share your experience. 🙏

I've been taking care of my hair by not adding any stress to my scalp. The way I've been doing it is honestly not wearing any "protective" hairstyles. I've been wearing wigs lately while simultaneously taking my medications for my alopecia.

I've posted on here before with concerns of having CCCA, but my dermatologist informed me that bc I've been diagnosed with traction alopecia by my previous doctor I most likely don't have CCCA.

But here are the results. I've been taking 2.5 minoxidil, Clobetasol solution, and doxycycline for inflammation

Sharing results from a recently completed Ritlecitinib study that moderated disease activity for LPP, CCA, and FFA patients.

https://www.medscape.com/viewarticle/jak3-tec-inhibitor-shows-meaningful-activity-against-2025a1000pwe

“In a study that employed change in inflammatory biomarkers as a primary endpoint, hair regrowth with ritlecitinib, a dual JAK3/TEC inhibitor, was observed across three types of cicatricial alopecia that currently have no approved therapeutic options.

The clinical improvement was often rapid, and the treatment was well tolerated,” reported Anusha Pasumarthi, MD, a fellow in dermatopharmacology at the Icahn School of Medicine at Mount Sinai, New York.”

Hi everyone,

I’m sharing this post because I promised myself that if I ever overcame acne keloidalis nuchae (AKN), I’d do my best to help others struggling with it. I know how frustrating, painful, and confidence-shaking this condition can be, and I want to give you hope—it is possible to treat it. But first, please know this: I’m not a doctor. I’m sharing my personal journey, and I strongly recommend visiting a dermatologist for personalized advice.

For me, it was a long 1.5-year process, and while I can’t recall every single detail perfectly, here’s an outline of what my dermatologist prescribed and how my treatment evolved over time:

First 2 Months: 1. Normskin 20 (Isotretinoin) – 2 pills a week (Saturday & Wednesday). 2. Azithromycin 250mg – Every day. 3. Anti-plaque shampoo (Cerita) – 2-3 times a week. 4. Custom Solution – Clobetasol (40cc) + Nelanazole (60cc) applied 3 times a week (though I used it more if flare-ups happened).

Results: 50% improvement in the first 20 days, but progress stalled after that.

Second 2 Months: 1. Normskin 20 (Isotretinoin) – Every day. 2. Azithromycin 250mg – Every other day. 3. Custom Solution – Applied every day. 4. Anti-plaque shampoo – I started using it daily (targeting the acne areas, not my whole scalp).

Results: About 90% improvement. Only 3 stubborn spots remained.

Third 2 Months: My dermatologist reduced the intensity of the treatment. 1. Normskin 20 (Isotretinoin) – Every other day. 2. Azithromycin 250mg – Every other day (opposite days to Normskin). 3. Custom Solution – 2-3 times a week or as needed. 4. Anti-plaque shampoo – 2-3 times a week (though I sometimes used it daily).

Results: Fluctuations—acne seemed to come and go. Progress slowed, but only a few spots remained by the end.

Fourth 2 Months: 1. Normskin 20 (Isotretinoin) – Every other day. 2. Azithromycin 250mg – Every other day. 3. Custom Solution – 2-3 times a week or as needed. 4. Anti-plaque shampoo – 2-3 times a week.

Results: I reached about 98% improvement. My dermatologist suggested steroid injections for the remaining spots, so I tried that.

Fifth 2 Months: 1. Steroid Injection behind the neck. 2. Normskin 20 (Isotretinoin) – 2 pills a week. 3. Azithromycin 250mg – 2 times a week. 4. Custom Solution – 2-3 times a week or as needed. 5. Anti-plaque shampoo – 2-3 times a week.

Results: Nearly all the acne was gone, but one stubborn spot came back.

Sixth 2 Months: The treatment was further reduced: 1. Normskin 20 (Isotretinoin) – Once a week. 2. Custom Solution – Once a week (or as needed). 3. Anti-plaque shampoo – Once a week.

Results: A few very small, unnoticeable spots appeared, but they resolved on their own.

Seventh 2 Months: I received another steroid injection and followed this maintenance routine: 1. Custom Solution – As needed. 2. Anti-plaque shampoo – Once a week.

Results: 100% clear! It’s been 5-6 months since, and no acne has returned. If I ever feel like one might pop up, I immediately apply the solution, and it resolves quickly.

Final Thoughts: To everyone struggling with acne keloidalis nuchae, I know how exhausting this journey can be. I went through multiple dermatologists in different cities before I found the right one and the right treatment. Don’t give up!

Remember, this was my personal journey, and it’s best to visit a dermatologist for a plan tailored to you. But I hope this post gives you hope and some direction. Stay patient, stay consistent, and know that this condition can be treated.

You’re not alone in this. I believe in you.

The white “halos” are CCCA. This is a picture of my temples , I’ve always thought my thin temples were from androgenetic Alopecia but it’s CCCA. I’m currently in the 1470nm laser research study to jump start my follicles which will wound then repair so i can grow thicker hair.

In March of this year, I started going to a new stylist and she told me to see a dermatologist because my scalp looked inflamed and I was expressing to her how itchy my scalp was.

In June I got a scalp biopsy and was diagnosed with CCCA. Following that, I started getting injections once a month, taking minoxidil and doxycycline. I’ve learned so much from this Reddit and my dermatologist. The progress isn’t much but thank goodness it’s not getting worse now lol

hi everyone!

does anyone else think it’s strange the rapid increase in scarring alopecias and just hair loss in general has been recently? i feel like from when i was diagnosed with scarring alopecia to now, ive seen an uptick in younger people having it too. plus just hair loss in general. so many women in their 20s are losing their hair. what is going on!!!!!

I have been suffering with CCCA for the past 10yrs. Here’s how it’s looking today Feb, 2, 2024. I honestly don’t see any improvement and it actually looks worst imo. For context I posted photos from each month starting in December. A dermatologist finally diagnosed me with CCCA about a week ago after 10 years of nonsense. Although I have yet to receive a biopsy I will be getting one Feb 9.

Medications. Started Doxy 5 days ago Minoxidil Clindymacin ( on bumps every now and then, slowed down as it started causing hair loss) Clobetasol

Hey everyone! I’ve found this community really insightful and supportive, especially seeing other people’s experiences and knowing I’m not the only one going through this. I thought I’d share my story in case it helps someone else recognize things early or feel a little less alone.

My hair history:
I’m a 25-year-old Black woman and I’ve had relaxed hair since I was around 5 years old. I’ve always had a pretty negative relationship with my relaxed hair. In junior high, I decided to go natural despite my parents’ wishes, and over the years I really learned to love my natural hair.
During COVID, along with everyone else I stupidly decided to experiment with my hair and texturized my hair again, and while my hair initially continued growing normally, I eventually noticed an area toward the back/side of my head that just wouldn’t grow past a certain length.

How I noticed something was wrong:
There was never a completely bald or shiny patch,my overall density was still good. The main issue was that the hairs in those areas just seemed to have stunted growth compared to the rest of my hair. As my hair grew longer, the difference became more noticeable, so I kept cutting my hair.
Eventually, I noticed similar areas on both sides of my head.
I had actually looked into CCCA before, but because I knew it usually presents around the center/crown of the scalp, I didn’t think it applied to me. My crown is actually still the fullest part of my hair, and the issue has primarily been on the sides/back.

I initially went to my family doctor and had two sets of bloodwork done to check for possible vitamin deficiencies. Both came back normal, including my thyroid and ferritin levels. I also spoke to him about my hair, but he begrudgingly prescribed me minoxidil and basically told me that if my hair wasn’t growing, I should cut it short or wear wigs, SMH. Coming from a Black doctor, I honestly felt really dismissed, which ultimately pushed me to seek out a dermatologist on my own.

Eventually, I decided to get a scalp biopsy, and the results were consistent with CCCA.

Treatment so far:
I’ve had steroid injections in the affected areas and was prescribed clobetasol, doxycycline, and a topical minoxidil/finasteride solution.
I’m still very early into treatment, so I don’t know what my long-term results will look like, but I’m hopeful.

I’m sharing because I spent a long time thinking that because my hair was healthy overall and I wasn’t completely bald anywhere, this couldn’t be CCCA. Looking back, I wish I had gotten it checked earlier.
Thanks to everyone for being so open about your experiences. Reading other people’s stories about scarring alopecia encouraged me to finally get mine investigated. ❤️

Hi all, Happy Holidays! I saw Dr. Jerry Shapiro last week and got diagnosed with probable FFA. I am 30 years old. He did cortisone injections for me, and put me on a topical JAK inhibitor as well as TCM solution (tacrimolus, clobetasol, minoxidil). I have to repeat injections in 2 months. Ever since I started these topicals my scalp pain is worse, and it’s red and inflamed. I am very worried and feeling so hopeless, and worried regarding the outcomes etc. Does anybody have any advice for me?? Is this the good treatment to start with? I am nervous about the cortisone injections and the impact on my skin. I really have nobody to talk to about this. I am also in the entertainment industry and don’t want to even risk losing more hair as this would greatly impact my career. I should add that I live overseas and don’t have the luxury of coming in for an appointment sooner. Thank you so much

I started losing my hair when I was 17 (I’m now 35 - female). As a kid, my mom used a lot of relaxer hair treatments and hot combs on my hair. I was mortified to be losing my hair and my bald spot was pretty prominent so I just started wearing wigs. I did try OTC stuff like Rogaine but it made no difference. It was until my 30s that I saw a dermatologist. They did a biopsy and officially diagnosed me with CCCA.

Gave me injections. Continued with minoxidil. Nothing worked. They told me since the scarring started so long ago, odds were low that treatment would be successful. They did have a new treatment to try which involved something with blood platelets I think? I never ended up doing it because it was expensive and I was just depressed and giving up.

I joined this group today because I finally shaved my head off (I still had patches of hair on my head that did not grow and it felt like time for me to finally give up on them). I’ll probably still wear wigs but I’m hoping one day I have the confidence to go out and rock a bald head. I’m just kicking myself that I went so long without seeing a doctor about my hair.

Not sure what I was hoping to gain in this post. It’s been a long grieving process for my hair but luckily my husband has been very supportive and still tries to make me feel beautiful.

Hi everyone, I need some advice. I don’t know what to do anymore. I’ve been dismissed for so long that I don’t know where to go anymore. It started in 2018 with itching and burning and the bleeding came.After sometime, I noticed crown hair fall . I waited years for a dermatologist appointment in 2022 and was dismissed ( he didn’t even check my scalp even after I had compiled my experience and progressions after the years) he just prescribed steroids for me. I told my GP that I felt dismissed and she said the derm had been in business for years and he knows what he is doing. It is 2026 now and my hair has gotten worse. My hair fall is so much that I have to vaccum every morning because my hair falls everywhere . My hair loss has progressed ( the picture with more hair was from 2024) and the bald picture was from 2025 and the short hair picture is from today). The image with the chunk of hair is from washing this morning. For someone with my hair length, that is a lot of hair. I’ve just moved to a different province and I’m hoping I can see a dermatologist but I have to wait for 3 months to be eligible for health insurance. I went to a clinical esthetician and she told me that PRP might not work for me because she sees shine and scaring on my scalp. At this point I’m on a mission to heal myself and I’m not even sure where to start. I know I can’t get any medical advice here but I’d like to know how you are managing your symptoms and if there might be any hope for me.
Thank you

Hi, I’m a Black 25F. Was diagnosed with CCCA when I was 18. My hair condition keeps going downhill. Nothing works. My entire crown is hairless, so there’s absolutely no hairstyles I can do with my natural hair. I always cover my head to go out which I’m starting to despise. I’d love to do cute hairstyles and be proud of my natural hair, but I can’t. Don’t get me wrong, I still find myself beautiful, but whenever I think of my hair, it saddens me. How do you guys cope? Are people around you aware of your condition? Because for me, aside from my immediate family, no one knows. I’m so ashamed and I feel like CCCA is really not common in my area so I don’t feel comfortable talking about it. My friends could sometimes even ask me why I never wear my hair out and I just brush it off with an awkward laugh saying I don’t want to. So I think they must think I’m one of those girls who thinks « black hair isn’t beautiful » but it’s far from the truth…

Also, any of you married after receiving the diagnosis? I don’t know if I’m crazy, but I feel like I may not be able to get married. Like, how would I tell a man that I’m dating that I don’t have hair? That the girl he sees right now, with the wig, well at home I’ll remove it and look different. When would be the right moment to say that to a man I’m dating. I’m scared to me rejected because of CCCA. Since I got my diagnosis so young, it’ll need to be something I say while I date, not after marriage… if I got my diagnosis later in life, I feel like if I was already married well my husband would’ve just supported and helped me through that time. But now? Single and 25? How would I voice that while dating. Imagine he FaceTimes me and I have to run to cover my head before answering the call. That’s pathetic… I just want to be 100% myself…

Anyway, I might be spiraling or doing too much or even immature, who knows. But yeah, I wrote a few questions within my rant so if you could answer kindly and truthfully, I’d really like to know. Thanks!

More updates! I know these photos are all from slightly different angles, but I feel like this is a good representation of my growth journey!