Recently Diagnosed with Lichen Planopilaris (scalp)

Posted , 71 users are following.

Hello all.  I'm a 30 year old male hoping to gain some valuable knowledge and insight from this community, as it's been a major struggle dealing with this disorder.

I've been fighting with the following symptons on my scalp for ~2 years now: red, inflammed skin, no flakes or scales, mild itching but nothing terrible, and noticeable hairloss in the affected areas. The areas affected are my frontal third, two thirds, crown and also my right side above my ear. There are still areas of my scalp that are unaffected and retain a proper neutral color. I previoulsy have never had this issue on my scalp before and there are no signs of it anywhere else on my body. 

After visiting 3 different dermatologist, I finally had a scalp biopsy performed.  The results were that I had lichen planopilaris of the scalp. My previous two dermatologist were treating it as possibly seborrheic dermatitis.  I never quire agreed with this though as I did not have the typical signs of SD: dandruff, flakes, scale, etc--just persistent redness and inflammation.  Even so, I tried every known dandruff shampoo and active ingredient available on the market to no avail. In fact, these generally just exacerbated the condition.

So far I'm been put on the following meds:

--Minocycline (bacterial)

--Clobetasol (corticosteroid)

--Fluconazole (Fungal)

--and my most recent derm wants me to start on immunusuppresants CellCept and Plaquenil

In terms of natural remedies, I've tried applying pure aloe veral gel, coconut oil, avocado oil, apple cidar vinegar...None of these really have done anything for me, sadly.

The Clobetasol topical liquid does midly help.  It seems to improve the areas least affected and brings my skin tone back to almost normalcy, but has little affect on the more pronounced zones. I also have reservations on being stuck using a steroid for my entire life for two reasons: 1. it's detrimental to the skin (thinning). 2. It's not treating the cause but seemingly only the symptom.

As of right now, I'm working on making some dietary changes (no dairy) and more of a "paleo diet" regemin. 

I have not yet tried the immunos as I've very hesitant to go down that route. My current derm states I need a baseline eye exam before starting up on these drugs.  Quite intimidating.  

I've heard a number of people report very good progress from holistic methods, such as Oriental medicine coupled with acupunture.  Wondering if anyone can comment on this?

I'm very much so at an impasse with this skin disorder. It has come out of nowhere and totally taken control of my scalp's health, and, well, my entire life to a large degree. It's extremely draining and does not allow you to focus on other parts of your day-to-day living; Instead, you're looking for "the next treatment of the week to try out on your scalp" hoping that you can finally get some relief.  

Thank you to those who read my post and looked at my photos attached.  I value any input user's here might provide to help me fight this terrible skin disease off.

1 like, 126 replies

126 Replies

Prev Next
  • Posted

    Hi Coligon,

    I’m sorry this frustrating condition is effecting you at such a young age. I cannot offer much in terms of advice but I can share my experience .

    I am currently being treated for erosive (oral) lichen planus. I was given fluocinonide by my oral pathologist which seems to help increase the rate of healing. In terms of my scalp, I have had an alarming amount of hair loss over the past year. I have also had sore spots in the back & front of my scalp which are not red or scaly but there seems to be a small patch of hair loss in the one I can see. 

    I am a 49yr old female therefore some hair thinning would be normal at my age. This is not normal- I have lost at least 50% of my hair.  I have not seen a dermatologist as of yet. I’m wondering if this is how it starts for OL on the scalp (sore spots with thinning hair in that area)?

    As far as OLP I’m managing like most-through diet. I have switched from a vegetarian diet to vegan. 

    Sorry I can’t be of more help.

    All I have are questions.

    All the best.

  • Posted

    I put emuaid on scalp every night really helps coz I don't want steroids or immuno drugs also I have gone vegan in the last 4weeks which is helping my oral LP I use aloe Vera shampoo and the gel please keep smiling as I do coz if you get down it gets worse come on keep strong xx

    • Posted

      The condition you have is different. Lichen Planapilaris affects only the scalp.  Lichen Planus affects skin on the rest of the body.   I also assume OLV is when Lichen Planus affects the mouth.  
  • Posted

    Hi

    Thank you for sharing your story. I have been diagnosed with LPP in October this year. I was already on a Paleo diet since February and want to look into the API paleo diet more seriously now. I am also planning Plaquenil. Not happy of course. It's been 2 months now and no improvements (kind of normal) I am just starting acupuncture and Chinese herbs for my condition and will keep you posted.

    Best

    Lexe

  • Posted

    I was diagnosed with LPP in Oct 2017 was prescribed plaquenil it didn't do anything for the sores or the itchyness in my head. I've started the pablo diet and thinking about doing the Chinese herbs and acupuncture.

  • Posted

    I have been diagnosed with the same thing , is there any good way to grow the hair back ? Im 27 and most of the middle of my scalp is bald from scar tissue which is pretty embarrassing considering how young i am , any suggestions would be great thank you
    • Posted

      Hi Jeremy,

      I am a 56 year old female and I have the same problem.  It is very devastating.  The bald spot sare growing in numbers and are getting bigger.  I have tried the steroid shots and that seemed to help a little.  After 3 rounds of that, my dermatologist stopped them because he felt I had reached a plateau with them.  Then I received 3 shots, 1 months apart of some type of anti inflammatory medication, but I can't remember the name right now.  I've tried clobetesal foam.  

      I think the best thing to try is to re-set your immune system with a cleanse and eat an anti-inflammatory diet.  I tried, but I have poor will power so I can't stick to it.  I've kind of resigned myself to going bald, which makes me very sad and depressed.

      My dermatologist tells me there really isn't any cure and specific treatment for this.  Because it's rare, there have not been many studies done.  They can only try to find something to slow down the inflammation.  Start with eliminating all dairy and all gluten.  There are several good books on anti-inflammatory diets, but then again, I've read contradicting information.  I guess it will be trial and error to find the right diet to keep the inflammation at bay.

      I wish you all the best.  

    • Posted

      Hi sandy and Jeremy I have vls and olp my scalp is really red n sore but no hair loss yet just looks generally thin I'm going for biopsy Monday coz doc doesn't know if it lpp or dermatitis !! My daughter is a hairdresser so she's given me a cute pixie cut so I'm not gonna worry if I go bald I shall wear a wig or hats please try not to stress about it coz it makes things worse I follow a strict vegan diet also no sugar it's dead boring but I know if I stray my mouth is red raw within 24 hours !! I've been told mine is caused by the Epstein Barr virus I had a positive blood test I think that's why there's no cure !! Just try to eat anti viral foods !! Xx

  • Posted

    Also  just been diagnosed with LPP .. I’m not cyliac  but my mother and many other family members are .. I’m  wondering about cutting out glutton?
    • Posted

      Lichen planapilaris is a rare autoimmune condition which is incurable. Make sure you see a dermatologist who treats patients with this condition.  
    • Posted

      Celiac has nothing to do with this condition.  Lichen Planapilaris is a rare and incurable autoimmune condition affecting only the scalp.  Visit the National Institute of Health website for more info and see a dermatologist that treats patients with this condition.  That is what I continue to do. 
    • Posted

      I would cut out gluten just because it's bad for you and dairy too.

    • Posted

      Hi sandy I cut out gluten and dairy am on vegan diet to try to control my olp as most other food hurts to eat . But the oral specialist said that is not a good diet for me she said I should try to eat minced up meat and fish (not a good thing to say to a vegan) !! I get plenty of protein from ground nuts/ seeds avacados etc !! I think animal products make the inflammation worse !! Xx
  • Posted

    I too have Lichen Planapilaris, a condition affecting the scalp.  It is a “rare” autoimmune condition that has no cure. Please check the National Institute of Health web page for more info. I currently have cortisone injections once a month and use a lotion prescribed by my dermatologist.  Make sure you see a dermatologist who treats patients with this condition.  On the very first visit, a biopsy was taken. Best of luck.  

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.