Lichen Planopilaris...newly diagnosed

This disease is horrible. I do not have any itching or burning either. The medicine is harsh and I have no idea if it is working.

What helped the most for me when I changed dermatologists is that she has a plan. She said, "I generally do this treatment for a year, if things look healed and there's not further inflammation, I cut back on the drugs 50% and then at 2 years if things still look good I take you off of the drugs altogether." So don't hesitate to insist on a plan and some way of judging how things are going.
Everyone told me how rare this disease is but both dermatologists in Vermont have multiple patients with it and my co-worker has it along with the exact same bald spots I do. She's been in remission for years without any need for drugs. So it gives me hope.

Do you do the topical clobetesol and minoxidil? Thanks for the advice. I am a wreck.

Just the topical Clobetasol, it's in a propellant. I recommend a squeeze bottle if you can get that instead. I hope yours goes into remission quickly. I was where you are a little over a year ago.

Don't be afraid to question treatments. Most of the studies I've looked at for treatments have been inconclusive or too small of test group. So some things work for some people and not others and vice versa. My initial derm thought it best to throw everything at it without tracking to see what might be working and my current one is better at having a plan. But both admitted that there's no clear cut treatment even for initial diagnosis. So there's no reason not to advocate for trying a treatment that you think would work better for you.

I have not used them to get a doctor recommendation but you might also find this site helpful - https://scarringalopecia.org/

My name is Nancy. I was diagnosed with LPP about a year ago, but it started 14 years ago. My scalp was on fire and lots of hair loss. Different doctors I saw could not help, but one told me to pay attention and I did. I found out that I had liquid behind my ears. Urgent care asked if I had any allergies. So I asked Google if allergies could caused hair scarring. To my surprise the answer was not allergies but uncontrolled histamine levels. The article was the best: the article said to lower your histamine levels with El Glutamine, a histamine lowering probiotic so some raise your histamine level— I used one made by Schiff. I noticed the itching and burning would stop, but when I ate it would itch and burn again. I began researching and found out that when histamine levels surpasses your DAO and is not lowered, it attacks your body. I began lowering my histamine to stop the burning. I realized that going on a healthy diet eating tons of spinach wraps daily, nuts, I had raised my histamine to high levels which is auto immune attacks. I have not cured it and still have the burning, itching scalp when I eat foods like chips. I’m trying not to make this post very long so many sea food is histamine high—samon is safe for me. Beware of smelling plants which can raise histamine. I am trying to cure myself, but lowering histamine back to normal levels, I read, is very hard. I have scaring above my ears and on one side of my temple.

So EL histamine by Schiff. I can't seem to find that? I may be doing the same thing. Eating all kinds of greens, nuts, etc. I would do anything to get this LPP under control. Thanks.

Hi Sophie, no its Digestive Advantage probiotic by shiff.
Buy the one that says fast acting.
They sell it at Walmart or Publix.
El Glutamine is another product. I use the 750mg pill by Jarrow.
Do you get the burning or itching? If you do pay attention
what caused it? Always massage the area so the blood can go to that area so not to cause scarring. Try using Clobetasol when you have itching. I really like rubbing with peppermint oil
when I have bad itching because I eat salty chips. Don’t eat food that was cooked and then put in the freezer. Let me know how you are doing.

Hi.
I actually do not have itching or burning. I just started losing my hair. Real bummer. What do they give you for treatment? My Derm put me on doxycycline but it is destroying my gut bacteria and I am not sure it is helping. Do you find the peppermint oil to clog your hair pores? Everytime I use an oil it seems more hair falls out. I really wish someone would figure this out. Thanks😊

Both of my dermatologists have told me not to use any essential oils on my scalp and to make sure my shampoo and conditioner don't have them. It's the one thing they both agreed on.

Hi Sophie, so 14 years ago after my biopsy all they knew was that my hair follicles were closing and basically that I was going bald from scarring Alopecia. They did not know why. They gave me steroid shots every 5 weeks and antibiotics. Nothing worked. I’m on a plane so I will tell you the names when I fly back home.
I could not sleep after the shots so I decided to put Peppermint oil on my scalp so hoping the effect would make my scalp hurt less. I fell asleep right away It’s an essential oil and does not make me break out So my biggest mistake, I think now, was that I did not continue using it. It’s anti histamine which is why it stops the itching and burning.
I became my own doctor and did research. I actually did not go to an affiliated doctor that the Mayo Clinic recommended until 6 months ago and asked for another biopsy. It was then that I found out that I had LPP. He prescribed me 2 meds with combinations of meds. I decided to take one at a time to see which one was working. So far nothing is working. So every time I eat something that triggers the burning and itching, I put clobetasol or peppermint oil and massage it a little. So far you can’t tell that I have hair loss