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Recently Diagnosed with Lichen Planopilaris (scalp)

Posted , 71 users are following.

Coligion
Coligion

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

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  • andrea36337
    andrea36337 Coligion

    Posted

    I have recently been diagnosed with LPP and my doc put me on the Clobetasol as well as Eucrissa and Doxycycline. I have found relief and notice that I don't have the irritation with the use of these products. I am down to just using the Clobetasol and just like you I don't want to be on a steroid forever. I'm considering pregnancy and I'm wondering if any of you have heard any feedback on pregnancy with LLP? Also, I have gone gluten free and I'm taking probiotics as well. I have tried to reduce as many things from my diet that may increase inflammation in my body.

    • Vero2525
      Vero2525 andrea36337

      Posted

      We are trying the pregnancy route but had a miscarriage. It seemed to help actually. I didn't know about diet issues or going gluten free or alcohol free or probiotics. We will try again in 3 months. If you wan, I can come back and update you in 4 months. I'm pretty fertile. We were ttc before the lpp diagnosis.

  • Vero2525
    Vero2525 Coligion

    Edited

    My dermatologist told me nothing about all of these things. He simply gave me clobetasol with 5000 mg of biotin and showed me the door. The biotin helped more than anything else so far. I will be taking doxycycline starting tomorrow with the clobetasol applied every other day overnight with a plastic cap. I will complete this and follow all the dietary advice presented on this blog for 60-90 days. If there is significant change, I will comment. I would like to control this before getting pregnant. Thanks to everyone here.
    • Keasha
      Keasha Vero2525

      Edited

      I was told that you can't cover the clobetasol. Please be careful. Dietary changes and reducing stress does help. I have had the most success using acupuncture and Chinese herbs. I take 200mg plaquenil 2x day. I lost all the top of my scalp hair previous to seeing the acupuncturist. I feel that and her he's have by far been the best. Most of my hair has grown back. I have learned to use hair fibers that I order on Amazon and it helps fill in area. I have tried everything under the sun. Teas, ACV, shampoos, oils, essential oils, vitamins you name it. I did quite using my clobetasol and use yin care from the acupuncturist. Her herbs have been the best. Doctors have no real way of treating it. They just hope to slow it down. I have seen dermatologist who all follow the same protocol. Mayo clinic suggest plaquenil 2x day and clobetasol morning and night on scalp Monday thru Thursday then giving the scalp a rest. I wish the may clinic would do studies involving the Chinese herbs. It's devastating to loose your hair as a woman. Good luck

    • RAS1010
      RAS1010 Keasha

      Posted

      Hi Keasha, Have you now got rid of LPP? How long did it roughly take? Is the chinese medicine route the best one to take? Appreciate your help

  • vicki3030
    vicki3030 Coligion

    Edited

    Hi Coligion - which dermatologist finally diagnosed you?  I have been to three - first one said I had TE, second said I had TE and FPB (I had a biopsy), the third one after going through my blood tests said I had possible Lupus so sent me to a rheumatologist and I have been treated for primary Sjogrens Syndrome and Mixed Connective Tissue Disorder.  So have been on plaquenil for nearly three years now.  My hair is worse and my skin now itches all over but especially on my scalp.  My hair is receding including the nape area and around my ears.  I went back to the third dermatologist and demanded another biopsy.  In the biopsy it referred to LP, but my dermatologist dismissed it on clinical examination as he could not see the normal scarring. He also said that as I am on plaquenil anyway, there wasnt much he could do.  He also said I am lucky as some people are completely bald!  I am a female in my late 40s, who used to have ridiculous thick hair.  Now I have hardly any hair and its shaved short.  My scalp is constantly itchy and has burning sensation, the rest of my body itches too.  I just want to see someone who knows there stuff when it comes to LP - so if you or anyone here can point me in the right direction I would be ever so grateful.  I live in the UK.  

     

    • Keasha
      Keasha vicki3030

      Posted

      Those symptoms sound like LP. Sorry your going through that. The only way of knowing you have LP is by biopsy. They can suspect it from symptoms and physical signs. My dermatologist said it's hard to diagnose it. You have to biopsy when it's red and flared up.

    • sandy3737
      sandy3737 vicki3030

      Posted

      Were you diagnosed with LP or LPP?  They are different.
    • Keasha
      Keasha sandy3737

      Posted

      I’m sorry I mistyped my diagnosis is LPP with biopsy results
    • sandy3737
      sandy3737 Keasha

      Posted

      ok, I have the same diagnosis.  You mentioned in comment that your hair grew back.  could you please share what treatment gave you these results?  thank you.
    • sandy3737
      sandy3737 Keasha

      Posted

      Hello,

      Here's an email address you can use to give me the information about the treatment you used to help with the hairless.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Kalki001
      Kalki001 Keasha

      Posted

      Hi Keisha,

      I’m suffering from Lichen Planus on my scalp as well. I read in one of your replies... you mentioned a chinese herb that you used and it helped a lot. Can you please please share the name of the chinese herb and the doctor you went to. I don’t want to use the steroids. I’ve been suffering with LPP for 10 years now and with diet change and colonics it’s is controlled on my skin a lot but nothing is helping on my scalp. As a women it’s devistating to go through this. As I’m sure you know. I was sooooo happy to read you got your hair back. That’s so amazing!!!! 

    • Keasha
      Keasha Kalki001

      Edited

      Hi . I’m sorry to hear it’s not helping with the scalp.  I had a comment deleted for listing names. My dermatologist explained that most my hair loss was from emotional stress and other stressors like new medications. I have not had a flare up on my scalp for months. When the follicle scars it will not grow back. Hair follicles have a resting time after the are she’d called Telogen effluvium Also called TE . The hairs can be in a resting phase for 1 to 2 years . Some hairs did take about 1 1/2 years to regrow. I was able to use hair fibers with an applicator where the hair was thin.  It is a long time to wait to see if hair grows but with this condition stress cause flare ups. I focus on reducing inflammation in my body with diet. Trying to eat more organic. My acupuncturist using herbs that are placed in your tea 3 x daily. It is a combination of herbs based on what your body is lacking.  My stress was reduced seeing her. One herb in the mix focuses on hair growth. I still have thin areas but am able to fill it the area with fibers. Also she uses Estem  with the needles.  Electric stimulation. Food is huge because there is stuff that contributes to higher inflammation.  You can private email me and I can give you the herb names and u can find an acupuncturist that uses that line.
    • evelyn22985
      evelyn22985 Keasha

      Posted

      I was diagnosed with LPP with a biopsy in Oct 2017 but had symptom for about a year before. My dermatologist put me on plaquenil, lwas on it for about 3 months my head was getting worst more sores and very itchy so I went back to him and he prescribed Minocycline which I had a very bad reaction to, I started taking probiotic and flaxseed oil nothing has worked. I'm wondering if you could give me the names off the herbs you are on.

    • andy14739
      andy14739 Keasha

      Posted

      how due i private email you or can you private email me what info thanks godbless
    • rhoda30391
      rhoda30391 Kalki001

      Posted

      Lichen Planus relates to the skin. 

      Lichen Planapilaris relates to the scalp. 

    • rhoda30391
      rhoda30391 andy14739

      Posted

      Saw a dermatologist who did a biopsy.  Doctor gave me lotion to use and I also get injections in scalp.  There is no cure. For more info, visit the national institute for health web site. 
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