Recently Diagnosed with Lichen Planopilaris (scalp)

Skin, nail and hair health
1

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.

2

Have you tried flaxseed oil?

3

I have been using a steroid mouthwash for almost a year now and it controls both the oral LP and a tiny bit on my face as well.  It has not disappeared but almost...  I agree that steroid use is a big gamble but it often does work very well and my dosage is extremely low.  Also, I am older and so not looking at decades of use ...But, you might want to give a very low dose of steroids a chance.  Also, don't overlook the roll of stress in all these auto-immune disorders.  (easy to say I know,) but often true...  Good luck on your quest to find answers...  please keep us posted.

4

Try flaxseed oil on your scalp.

I haven't been diagnosed with scale LP but skin. I am still dealing with scale issues similar to yours though. I found Demarest shampoo helped remove the build up as long as there is no broken skin.

I have just started using flaxseed oil one the scalp "going on a week now" and I've gotten relief from this. I've also been taking a flaxseed tablet once a day along with flaxseed meal on my cream of wheats to help my gut issue along with a probiotic at lunch and dinner to help with digestive problems " I've bee doing this for about 2 months" All these have helped and I haven't flared up in a month and half. This is also fallowing a round of prednisone for a week.

I'm finding out that my gut health is playing a role in my breakout. That's why I'm taking a probiotic and using flaxseed. I haven't had any prior skin issues prior me having a candida over growth in my digestive track.

5

Coligion,

Are you sure you don't have alopecia areata? If you do have lichen planus make sure you stay away from all artificial sweeteners--no diet soda, sugarless gum (unless it has xylitol or stevia--natural sweenteners). Sweenteners used in diet sodas will aggrevate and worsen LP.  I've had LP for 17 years and have tried to control it mostly through diet--no gluten, no dairy, no alchohol, and I'm vegetarian. Does this all help?  Yes and if I eat onions or tomatoes, it flairs up. If I drink a diet soda or chew sugarless gum, it flairs up. If I get stressed, it flairs up. When it flairs up, it bleeds and is very painful. I've tried all sorts of medications and the only one that will ease the pain is clobetasol propionate> I onlu use it every once in awhile adn rub it in good. I've resigned myself to the fact that I may have LP for the rest of my life so I'm just living with it.  Also, controlling inflammation through diet is key to a healthy life. 

Seagal

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I have oral erosive LP, so no idea if my experience is relevant. I find that green tea helps, and use this both topically with my steroid mouthwash and orally as tablets (which is slower to work). I take 5 x 750 mg tablets each morning, which is much more than Holland and Barrett recommend, but is not too far above what has been used in some trials. It is mildly immunosuppressive (inhibits T-cell activation), but that may not be the only way it works for me.

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garbear:  No, I have never tried flaxseed oil.  Thank you for the suggestion. What is the probiotic you are using and how did you select it?  When you are applying the oil to your scalp, how long are you letting it set in for before rinsing out? I looked up Demarest shampoo, and it seems like it's more for psoriasis/SD type treatment, which has typically made my condition worse.  As of right now, I use about the simplest shampoo with the fewest active ingredients possible (Pharmaceutical Specialties Free & Clear Hair Shampoo).  I really don't have any scales, flakes, or any build-up of any kind.

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margaret29034: What is the active component in your steroid mouthwash? I have continued on the Clobetasol Propionate 0.05% topical solutuion for my scalp. I typically use this twice daily (morning and then evening).  I am not really seeing much benefit anymore from this, though.  Only in the milder locations.  Whatever tiny benefits I do see in the less affected areas disappear quickly unless I continue regular use. Again, the benefits I see are very minimal and not substantial. As for stress, I am doing my best to reduce aspects of this in my life as I also agree it's a huge part of this condition and likely where it originated from in my case. Sadly though, I have not seen improvement, even with obvious reductions in these areas. 

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seagal: Thank you for the response. No, none of the dermotologist I saw mentioned the possiblity of alopecia areata as a diagnosis. From some quick reading, alopecia areata typically does not produce the pronounced red inflammation I am seeing, and it's more pattern/circular based hair loss.  The affected areas I have are not limited to a certain shape or zone.  I could post my actual scalp biopsy results if that would be at all be useful?

Where is your LP located?  I have made a concerted efforts to change my diet the last month. I would never consider myself a bad eater, though.  I did cut out dairy for two weeks to see if I noticed anything--no changes evident.  I also rarely drink any alcohol and no pop/soda whatsoever (water only for me). I do have milk/cereal often though, but really, my liquids mainly consist of water/some milk/and the occassionally alcoholic beverage.

As I mentioned above, I've continued on the Clobetasol Propinate 0.05% solution, but I'm really not seeing any substantive benefit from it. My third and most current derm wants me to start on a hydroxychloroquine (Plaquenil) if the Clobetasol is proving uneffective.  What other medications did you try that were deemed unsuccessful?      

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john71813: Thank you for the response. How exactly are you applying the green tea topically in your condition?  I'm not sure if I've ever read anything about someone applying green tea topically to their scalp for LPP. I have, however, started to consume more green tea, as it's said to be a favorable addition to anyone's diet for autoimmune disorders. 

11

Just a quick update:

I'm not seeing much improvement from continued use of the Clobetasol Propionate 0.05% solution. I'm now looking at getting on the immunusuppressant that was recommended to me (Plaquenil -- hydroxychloroquine). I have a baseline eye exam planned for tomorrow as one of the possible side affects is retinal damage with prolonged use. Not thrilled to be starting down this path, but nothing is really helping thus far...Feeling quite desperate. 

Still working on dietary changes, reduction in stress levels, and other natural remedies.

 For those interested, my scalp biopsy read as follows:

"Comment: Perifollicular lymphoctes are seen predominantly surrounding the upper portions (infundibulum and isthmus) of hair follicles, with adjacent foci of perifollicular mucinous fibrosis, highlighted by colloadal iron stain.  The interfollicular epithelium is spared. Neither fungal microorganisms nor basememt membrane changes are seen with PAS stain. The changes are most compatible with lichen planopilaris.

Final Diagnosis: Changes consistent with lichen planopilaris."  

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Active ingredient in mouthwash is Betamethasone (it is the same elixer they use to get steroid medication into little children, doesn't taste bad!  It is stronger than prednisone though so dosage needs to be kept very low in my opinion ...  when I try and get off of it, the OLP gets worse, so far anyways... good luck in finding help, it isn't easy!

 

13

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.

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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.

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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.

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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.  

 

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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

18

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.

19

Hi,

Have your been diagnosed with LPP?

20

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