LPP experience after 6 years
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:
- 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.
- 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.
- 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.
- 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.