r/Lichenplanus

I have had Lichen Planopilaris symptoms for around 6 years and after experiencing different phases of the disease, I started noticing patterns that made me question whether LPP may have a much stronger brain/skin/immune connection than people realize.

I want people here to share their experiences honestly because maybe if enough patterns match, we could understand the root causes better instead of only suppressing symptoms.

Here are my observations:

1. Emotional signals feel massively amplified before attacks

For me, emotions like stress, embarrassment, fear, anger, pressure, or even emotional attachment feel like they get amplified internally. Small stress can feel huge physically.

The strangest thing is that when I travelled to another country where I had almost zero emotional stress, no social pressure, no emotional attachment to people around me, and basically nothing mentally “heavy,” my disease became inactive for around 8 months.

Not low stress. Literally almost no emotional load at all.

It made me wonder whether some of us have an over-amplified neuroimmune response where emotional signals become inflammatory signals.

2. Different follicles behave differently

My mustache area feels weak. Sometimes hairs shed easily even without a massive inflammatory attack.

My beard area was different. Before major shedding happened there, I first had dandruff/inflammation in that exact area for months. Then eventually a “big strike” happened and the hairs in that exact spot suddenly shed rapidly afterward.

It feels like:
inflammation → weakening of follicle defenses → major immune attack → shedding.

3. Before LPP started, other things happened first

Before LPP:
- I had heavy dandruff
- then alopecia areata
- and keratosis pilaris at the same time

The alopecia areata improved and the keratosis pilaris disappeared, then later LPP started.

This makes me think there may be a progression or immune/environmental shift happening before LPP fully develops.

4. Severity seems linked to intensity of internal stress/signals

This is one of the biggest patterns I noticed.

For me:
- mild internal stress = smaller attacks
- moderate = scalp + beard
- severe = scalp + beard + skin symptoms
- extreme = whole body feels inflamed/itchy/reactive

Almost like the body enters a massive amplified inflammatory state.

I know this is not scientific proof. These are just personal observations after years of living with this disease every day.

But I genuinely want to ask:

Have any of you noticed patterns involving:
- emotional stress
- nervous system overload
- dandruff/seb derm before LPP
- previous autoimmune conditions
- body-wide itching during flares
- symptoms improving when emotionally detached or mentally calm
- specific areas feeling “weaker” before attacks

I’m trying to understand whether there’s a deeper neuroimmune/root mechanism behind this disease that we are missing.

I had the first signs of Skin Lichen Planus in 2023, after the most stressful period of my life so far (traveling abroad, planning my wedding, finishing and defending my thesis and my sister having her first child, all at the SAME time). It happened right after coming home from a waterpark trip, and getting this mosquito bites-like inflammation on my skin specially on my feet and legs, that turned into hyperpigmentation. I swore it was a fungus, but my doctor did a check up on me and told me the diagnosis.

The more I learned about this condition, the worse I felt. I covered my skin like I had a contagious disease. But with time, hydrating lotions, sun protection, a lot of cortocoids, vitamin D supplementation, going to an allergist, dental preventative check ups, retinol for the hyperpigmentation and PATIENCE, I finally look sooo much better now and feel more confident. Sending love to everybody going through this right now. 🫂🤍 I've had short remissions in between too, and I don't know how long this one will last, but I'm thankful nonetheless.

(Sorry about my English, I'm not a native speaker).

Photos below of when it first started and how I am now. 🩵

I wrote this on another forum in July 2024, after battling this disease for about a year prior.. I'm still clear to this day, 100% clear. Dont give up hope theres an answer out there for you. Just gotta find it.

"After a year of trying every supplement on the market, changing my diet, giving up alcohol and applying nearly every cream available in modern medicine. I can say with confidence that none of it worked.

The only thing I can say really worked for my LP/OLP is Otezla and UVB therapy. I'm in remission, haven't had a new lesion or flare up since March. My skin lesions are gone, and my OLP is about 95% gone. The pigmentation is still on my body, but it's fading slowly. My OLP has only a small feint white line on the inside of my cheek. It use to look like a spider web in my mouth.

If your insurance covers it and you can deal with the side effects, I implore you to ask your doctor about Otezla..I was offered 2 other drugs that supposedly had a higher success rate, 1 of them being a Jak-Inhibitor. But decided on Otezla. I wish i would have started this drug last year..! Also if you haven't started UVB therapy, go now. It takes alot of sessions but it definitely helps speed along the healing process.

Also, try not to Google every little thing about our condition. I know it's hard, but the added stress just made my flares worse."

Anyone else has it? Inner arms, legs, midsection and spreading over the rest of the body with time.

Got a biopsy and got it diagnosed. No idea what to do next or what triggers it.

Please help. Any ideas tips or tricks that can help.

It’s hardly itchy.

Looking for dental floss recommendations that are mint and cinnamon flavor free. Also prefer no stringy (like the coco brand) my teeth usually shred those. Oral-B Glide has always worked well. My gums do better when it’s more of the smooth band than a rope of dental floss.

Open to loose dental floss and dental picks. Hard to find any good ones in store that don’t have mint or break easily.