Lichen planopilaris, an autoimmune disease of the skin.

This post is from 3 years ago from a blog I used to maintain with focus on spirituality. The reason I am reposing a portion of  it here, is that lately it has been getting a lot of interest and I wanted to make sure that readers who have contacted me about LP – Lichen planus (body) and LPP – Lichen planopilaris (scalp) disorders, as well as other skin or autoimmune disorders, can easily access the info.

Posted on July , 2010
… I have a skin condition – Lichen planus (body) and Lichen planopilaris (scalp). According to my doctors, it is not exactly known why it appears, it is not uncommon, not contagious and not treatable. It just sits there until it runs it’s course and goes away on its own within a year or two only to come back at some point later and on/off again. If itchy I must cover myself in a layer of hydro-cortisone cream twice daily – I did not, as my rash is not bothering me at all, not itchy, and call me silly, but I have a little problem applying cortisone all over my body for an indefinite length of time.

On scalp it is a bit more problematic, as one may permanently loose hair if scarring occurs in the affected area. Well the “treatment” is a steroid cream to merely keep it under control. But doctors can not guarantee that it will in fact stop anything from spreading. Like I said above, according to conventional medicine (4 different doctors), there is no treatment. However I believe that with this rash my body is trying to tell me something and I do not believe that it is possible for something like that to just appear for no good reason. So I am determined to find out what caused it and how to live with it.

And this is a rather large thread of comment and my replies that may be helpful for readers interested in this particular disorder.

I was diagnosed with lichen planopilaris a week ago after a biopsy. The only symptoms I have are some hair shedding and some itching a few months ago. However, when the dermatologist diagnosed me with the issue, she put 15 needles with anti-inflammatory in my head and prescribed me cortizone cream to apply 4 times a week. Well, after the shots were administered, my head started itching and burning! It got worse when I applied…therefore I stopped.

I can’t seem to see any signs of it on my head, such as bumps. Can you see anything on your head?

You mentioned that it goes away on its own. If this is so, I hope I have hair left when it goes away! I am thinking about starting a nutritional program called Nutritional Balancing. It is conducted through a hair sample analysis and you take supplements based on what your body is deficient in or what kind of toxins you need to get out of your system. What are your thoughts around this. It’s really nice to find someone else with this condition.

I look forward to hearing from you.
Chris

  • Hi Chris,
    Yes I also do hair testing with my clients. I believe that there are few simple steps that you need to take before making any drastic changes. I have been diagnosed 3 years ago and still have most of my hair :) I am asymptomatic as of now, but I also do have flare ups on occasion and I do have some scar tissue, one spot is about a size of a quarter.
    In my experience with this disorder it is about managing it, and making gradual lifestyle changes, eliminating allergies that cause inflammation, detoxing, supplementing and eating right for you and your body. In fact I think it is so much about an ongoing disease management, that I stay in touch with my clients long after we are done working together, so that as new questions, problems arise, I am here and ready to help and support them.
    All autoimmune disorders are inflammatory. So first thing I personally did was to change what and how I ate, I saw effect of it within a week. I do agree with supplements, but I also support opinion of many doctors that as the latest research shows we have to be careful of what we take and it what doses. I take food based supplements and not synthetic ones.
    Stress/lifestyle is a big factor. I work together with dermatologists/doctors and they welcome an opportunity to provide their patients with additional support as far as nutrition, supplementation, lifestyle changes, etc. So I would make sure that the counselor you work with feels comfortable reaching out to your dermatologist to support your healing. Unfortunately doctors do not have the resources nor time to talk with you weekly, to support you with nutrition advise, to suggest and help you as far as lifestyle choices you make….so most do appreciate involvement of a good health holistic counselor.
    I truly hope this helps! Good luck and please let me know if I may be of any help!
    Best,
    Elena

  • Hi Chris,
    I just wanted to check in with you, to see how you are doing, adjusting…
    I hope you are feeling better and empowered and making some good changes to your lifestyle :)

    • Hi there,
      Thank you for checking in with me. I sent my hair sample off last week for a hTMA analysis. I have made some changes to my lifestyle, such as no sugar, dairy and wheat in my diet and have cut back on exercising 4 hrs a week instead of 6 so my body can get more rest. I will get the results of my hair sample in a few weeks and will start taking supplements based on my results.

      My head has started itching again, which is quite bothersome. Any suggestions for me based on your experience?

      I look forward to hearing from you.
      Kind regards,
      Chris

    • Itching is associated with inflammation, whenever my scars start itching I know they are active and inflamed, therefore I most likely will be loosing hair in that spot. Do you develop dry skin patches that come off like large flakes?
      I have noticed now, that I have been working with Lichen Planopilaris for 4 years, that when I cheat on my diet – I immediately get itchy spots. My scalp is like a thermometer of my health now, if I am not taking care of myself it lets me know :)
      Also keep in mind that it takes time for the cells to renew themselves, and you have indeed made some great changes to your diet, but you need to allow your body to heal. I also don’t think that exercise is bad, but lack of rest is. So if you are active just make sure you get enough sleep, and maybe replace those hours you have taken out of you routine with yoga – yoga is great to reduce stress, and stress reduction is an important part of your healing.
      Also Chris, do you mind if I use your comments and questions as a post on my nutrition educational elenaselivan.com website – I think it may be very helpful for others with the same disorder. I have many people asking about autoimmune disorders, and skin related especially. I will not use your name, but you are welcome to reply to it.
      Please stay in touch and let me know how you are doing!
      Elena

    • Hi there,
      No, I don’t mind if you use my comments for your health site. It’s strange because I find that when I go outside, my head itches less. I wonder what this could mean. Do you know if this condition goes away over time? I don’t notice my hair thinning, I just notice losing hair. What type of diet do you recommend?

      Kind regards,
      Chris

If any new comments are posted from now on, all the info will be here in one place.

To your health.

Elena

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Showing 74 comments
  • offthehookbykeke
    Reply

    Hi Elana. I was diagnosed with Graves’ disease a few years ago but suffered the symptoms for several years prior. I also experience this type of annoying rash but so far doctors have been unable to explain what it is. I have had misdiagnosis of shingles, tree allergies & a few other explanations for this rash. All of them wrong! Now zi am pretty certain I know what it is! I think perhaps it is time to switch doctors ! Thank you for posting this!

    • Elena
      Reply

      Hi Karen,
      Lichen Planus can be diagnosed with biopsy – until they did do the biopsy, non of my doctors had any idea what it was. They tried to treat it with antibiotics, with topical creams, etc.
      This rash was not at all bothersome to me, no itchy (but I hear for others it may be), and looked like my whole body, from neck down was covered in pink goosebumps, permanently, It did clear up completely after a year on a clean diet.
      Ones I was able to lower the inflammation in my body through a clean diet, take all the allergens/irritants away, strengten my immune system and get the stress a bit under control – it did get better. Now the only signes left are the scars on my scalp.
      In my experience, most autoimmune disorders do not come along 🙂 eventually if a patient is not getting healthier, stronger and immune system is still compromised and out of balance, they will develop other autoimmune diseases…
      If you do not mind, please let me know what you end up finding out about your rash!
      Best,
      Elena

      • offthehookbykeke
        Reply

        Hi again Elena,
        Thanks so much for taking the time to respond to me. I appreciate!
        For me this rash can be quite itchy…especially on my neck and around my ears. I’ve noticed that flair ups happen when I am under a great deal of stress. I suffer most in the heat and the sun seems to aggravate it more. This may be because my body does not regulate extreme temperatures due to Graves. While I’ve not had a rash for a few months now, thankfully…I plan to have the biopsy and will gladly let you know how Everything turns out for me.
        K

        • afs
          Reply

          Hi Linda i cannot tell you how much reading your post has affected me , that your hair grew back! I have had LPP for three years and basically started when my third child was born. Unfortunately my LPP has progressed at such a rapid pace that my experienced doctor has never seen before. I hardly have any hair left and it has a profound psychological affect on me. I just got the results of my second biopsy showing that the LPP is still active. I follow the autoimmune protocol paleo diet and I’m trying hard to limit stress but nothing seems to be working. Can u please shed some light on what exact steroids u applied or had injected, how long etc that made your hair grow back?????? Afs

          • Elena

            Dear afs, thank you for visiting my blog and for your comment. If you are referring to a comment by Linda Moersen from June 2, 2013, I am afraid we will never know the answers to your questions 🙁 Unfortunately, Linda has not replied even when back in 2013 I have responded to her comment with similar questions.

            Good luck with your journey! Elena

          • Dianne

            AFS – I know it has been a year since this comment, but I too am on my way to losing all my hair. If stress is a factor for progression, nothing is more stressful than being a woman who is losing her hair. I would like to discuss how you are coping and feeling and if you have had anything that has worked for you? I don’t feel like there is anything that will help at this point, but I would like to reach out to someone in my same position that might want to share ideas and or information. Thanks!

          • Elena

            Hello, Dianne. I am sorry about all the stress, indeed hard not to be stressed out with this condition. One resource I suggest is this great Facebook page https://www.facebook.com/groups/237459489737710/ There you will find support, advice, understanding and success stories from those suffering from LP, LPP and OLP. Good luck!

  • Linda Moersen
    Reply

    Approximately 6 years ago I was diagnosed with Lichen Planopilaris. My scalp had red, bumpy scabs, but the real problem was I was losing massive amounts of hair! After going to several specialists, one doctor sat me down and said “I don’t care what you have read, but the real cause is “stress” and you will keep losing hair until you make changes in your life.” Well that got my attention and I am happy to say that with topic steroids and life changes I am now symptom free! (And my hair grew back!)

    • Elena
      Reply

      Linda, this is an awesome news for everyone who has this condition! Thank you so much for sharing! I get so many inquiries about this. You feedback will be so useful to so many people! Did you do steroid shots directly into the scalp or did you only use topical? Also did you apply steroid only to active, red areas, or also to the spots that formed scaring.
      I also was told that it is stress 🙂
      Elena

  • Reply

    I am particularly interested in how you have dealt with lichen planos but not large areas, rather a very small area that makes treatment challenging. I am curious about the inflammation aspect and will read more.

  • Reply

    On second thought, maybe it isn’t what you had as it does not look that way at all…but that was my dx.!

    • Elena
      Reply

      Hi Cynthia! Thank you so much for your comment and for visiting my site!
      I was diagnosed with Lichen Planus via a biopsy. If you google Lichen Planus images you can see that it presents itself in many different forms, some look like rush, some form clusters, different colors, ets…
      Also my picture is not a professional image, but my rash was red (which is hard to see in the image) and did look like many of the images you find googling.
      I did completely change my diet and there few posts I link from this article to, on how my diet effected the rash. Please do let me know if you have any questions! As far as small spot – that is how my rash started, and all I did was what Doctors told me – steroids and cortisone creams. In my case nothing helped until I changed my lifestyle and my diet.
      Again, please fell fee to ask any questions or if clarification is needed, Elena

  • Melanie
    Reply

    I was diagnosed with lichen planipilaris about 6 years ago. I have lupus, Crohns, hashimotos, and an eye autoimmune as well. I am going bald in many parts of my scalp. I went to a dermatologist for years but found that the cortisone shots did nothing but disrupt my hormones. I had allergy tests done which have been great for my Crohns management, but the last autoimmune to heal has been my head! What other hints do you have to get rid of lpp? I teach first grade and so stress is kind of a factor lol:-) Thank you!

    • Elena
      Reply

      Hi Melanie. I am sorry for replying just now, we were on vacation with a limited access to the internet and so now I am playing catch up :).
      In my case cortisone and steroid shots did nothing except create these dents in my scalp. My dermatologist “did not know what causes them”, my physician actually suggested MRI as she was worried about my scalp loosing the fatty layer of the skin. Finally I did my own research to find out that one of the side effects of steroid shots is in fact loss of the fatty layer. How could our doctors prescribing steroid treatment not know this?!
      I still have trust and respect for the medical profession, I still go for my physical and do all the routine tests, but also am clear that my health is in fact in my own hands 🙂
      Anyway…stress, ahhhh….you know it is easy to say – lower the stress, but I find it is to be very difficult for most people to achieve. I think it is about maturing into accepting things as they are and not taking life personally…Byron Katie says – “It is happening for you not to you!”
      How are you dealing with stress? Are you feeling better now that you have gotten some of the issues under control? That surely would also cause stress to have to deal with so much on your plate! It must be so hard! Please feel free to write to me in a private message at elena@elenaselivan.com perhaps we can chat via email. All the best, Elena

  • yuneisy cancel
    Reply

    Hi:

    I was just diagnosed with lichen planipilaris and would like to know if I should do the topical steroids or the shots to start with. I do believe that the main reason for this in my case is stress and poor nutrition (skipping meals). I would like to get some help in changing my diet, I don’t want to end up loosing all of my hair. I know I need to control my stress but this news is just not helping. Thanks in advance for your help!

    Yuneisy

    • Elena
      Reply

      Dear Yuneisy,
      I am so sorry to hear that you have just been diagnosed with lpp. I also apologize for not replying sooner, we have just came back from vacation and I am trying to catch up with all the email/comments/messages…
      Yuneisy, it would not be right for me to advise you on a medical treatment, I am not a doctor. What I do is help people to prevent disease from occurring as well as strengthen the immune system and balance it out in presence of the disease, so that body had a fighting chance! I would highly recommend changing your diet and your lifestyle, as whatever you were doing in the past is no longer able to support and nurture your body. I do give a lot of general diet advise in the post above as well as in the comments here, but to give a personal, specific advise I have to have more information. I know that for me the diet and lifestyle change did the trick. Especially diet, as that was more immediate. Literally within a week I could feel and see the difference.
      I remenber like it was yesterday, how getting the news of the diagnosis was complete opposite of stress reduction. That was probably one of the most devastating news I have ever had and dealing with this took time…How are you managing?! Have you started the treatment?
      Also please do feel free to email me if that helps – elena@elenaselivan.com
      All the best to you! Elena

  • linda
    Reply

    I am a new member to this club of women with this hair loss problem.
    I was diagnosed with lichen planopilaris about 8 months ago…..to my devastation…when the doctor said there is no known cure !
    I have had just the cortizone shots as my treatment so far.
    I have been trying to eat more healthy and willbe trying to get back to exercising .
    I had this appear after a few years of stress over a bad break up and money issues.

  • Elena
    Reply

    Hi Linda, I had the same pattern of few very stressful years and not really taking care of myself as I could have. I was busy, stressed, depressed, pushing myself too much and so eating badly did not help. And now I have scars to show for it 🙁 My only job now is to support my body in healing, help it get stronger and healthier and prevent any other complications from occurring.
    8 month….how are you? how are you managing? how are you feeling?
    I hope you can find some help and support here! Thank you for stopping by! Elena
    And Linda, if you feel like it, feel free to email me directly through the contact form or at elena@elenaselivan.com.

  • Hatcho
    Reply

    Hi Elena for anyone that has LPP we have a Facebook suport group to help each other, if you like to join us please send an e mail with your info to lppletsputoutthefire@gmail.com ….
    Thanks
    Hatcho

    • Elena
      Reply

      Hatcho, thank you so much for visiting my site and I did email you my info 🙂

    • recently_diagnosed
      Reply

      Hi Elena, it’s great that changing your diet worked for you. However, talking to doctors it seems like only 5-10% have any changes in LPP outcomes after changing diet, so others should be aware of that. It appears you are one of the lucky ones. Changing one’s diet may be worth trying for those just diagnosed, though.

      • Elena
        Reply

        Well, to be honest, 90% (if not more) of conventional doctors have no knowledge, education or even willingness to be open minded about effects a diet may have one one’s health!

        One would think that any of my numerous doctors took the fact that I am in remission seriously! None of them! The fact that I stopped all the meds for their ineffectiveness and side effects, and all i did was a diet and a lifestyle change – they did not want to hear that, just dismissed it.

        So the only thing that I am lucky with – is the fact that I got LP/LPP/Celiac in the first place! As a result I was open, willing to make changes and to work hard to get and stay healthy (it was not luck). I look at my family, my kids, and they are different people now, we all are. We are healthy, strong, in a better shape than before. I am grateful to have been put on this path of healing, education and now sharing my experience with others.

        And changing one’s diet is worth for everyone! People eat terrible foods – sugars, processed carbs (white bread, pasta, white rice, potatoes), packaged food, pre-made foods, GMO, processed meats full of antibiotics, hormones and God knows what else, drink anything but water. What they do not eat are fresh fruit, fresh vegetable/vegetables at every meal, soups, salads, good quality meats, eggs, poultry, drink water, herbal tea…
        How can anyone expect to stay healthy and especially to heal when all they feed their body is junk!

        Wow 🙂 you got me on the roll! I need to make a separate post of this subject. LOL

        • recently_diagnosed
          Reply

          Hi, sorry if I was unclear, what I meant to say was that 5-10% of patients see significant attenuation of LPP after changing one’s diet–not that only 5-10% of doctors think diet can have an effect. Still, as I said, it’s worth trying because no one knows whether they are part of that 5-10% for which changing one’s diet would have a significant benefit (although all doctors recommend cutting out dairy, they don’t expect it to solve the problem.)

          Regardless, it is very nice to see a blog on LPP. As far as I can tell, it is the only one on the web by someone who developed LPP and had a remission. Out of curiosity, when were you diagnosed? How long have you been in apparent remission?

          As I said, it’s nice to see someone who has a good outcome, but I am confused as to how this could occur in an autoimmune disease. As I understand it, the understood etiology of LPP is as follows: The body has a set of T-cells, each of which recognizes a specific antigen. If the T-cell which happens to recognize the hair follicle ends up encountering a hair follicle follicle, then that particular T-cell will multiply, creating an army of T-cells that recognize the hair follicle. Some of the T-cells die off after the original insult, but you are left with a lot more T-cells which target the hair follicle. This means that even if you cut out the original trigger (in your case, your diet), you still have more of the T-cells that destroy hair follicle, and it is likely that they will get activated on their own from time to time (e.g., a chance encounter of that T-cell with a hair follicle would trigger a flare-up.) Therefore, eliminating the trigger will slow the progression of the disease and reduce the number/severity of flare-ups, but should not be able to permanently put it in remission.

          • Elena

            In this case I was the one unclear 🙂 – My LP (skin on my body) is in remission it seems…as I have not have had a flair up in three years, ever since the original rash went away (took more then a year for every sign to clear up).

            The trigger is not known really – I got better not only due to the diet changes, but just as importantly to lifestyle changes – better stress management, slowing down a bit, etc…trigger could be the blood pressure meds I was put on for a few months, the C-section, a compromised immune system after pregnancy, extended nursing (two years), a very stressful few years prior to that pregnancy, bad diet…in my opinion it is a culmination of things! One of them or even a couple would not have any noticeable health consequences, but all at ones (shit hits the fan type of moment 🙂 – and vu a la – I get this skin thing and a few months later and a couple of biopsies later I get the diagnosis of LP and LPP.

            Back to the remission – my LPP is inactive, I can not call it a remission, as it is sort of my health meter now – I eat badly, repeatedly (like on vacation) and I get flare-ups, very quick ones, lasts no more than a day. New spots, not old. Old spots are healing nicely, indentation is gone (not all of them are scar tissue, some are just hair loss) few hairs growing into the scars here and there. I should take some pictures again and post. Did it when just diagnosed, and then just stopped stressing out about the progress of LPP.

  • Linda (lmb838)
    Reply

    Hi just came across our blog because you liked my own blog post, thanks for that. I too have LP and found your info very useful. Set me off looking at how I could alter my diet to see if what I’m eating is causing my problem. I thought eating plenty of whole grains and low fat dairy was good for me but seems not. Thanks for the steer.

    • Elena
      Reply

      Linda I am so happy you found my blog and I truly believe LP can be eased if not put into remission. I was diagnosed with LP and LLP while nursing my youngest, so I refused steroid and cortisone treatment and had to find an alternative way or I was going to continue to loose my hair (permanently). I was not ready to go bold at 37! LP was the least of my problems! So i was very committed and very dedicated, it worked for me magically! Now I know it can work for others! Good luck to you and please know that I do offer a free one hour consultation to everyone interested in getting healthy!
      Best to you! Elena

  • mmmarzipan
    Reply

    You are so brave, Elena! And thank you for sharing your experience and knowledge with everyone who reads your blog. You have helped many, I am sure x

  • Moira Williams
    Reply

    Hi Elena, I too have been diagnosed with LPP. I have been reading your blog with great interest and all your usefull comments. I started with LPP February this year. I was wrongly diagnosed by two doctors and after all their prescribed medications failed and only made the condition much worse I asked to see a dermatologist in May. I was put on a waiting list and finally saw a Consultant at the end of July. When he told me what he suspected I had I nearly fell off my chair in horror. What a mouthful – frontal fibrosing alopecia related to lichen plano pilaris. The only word I understood was the dreaded ‘alopecia’. I was devastated, especially when he said there was no known cure to date!

    After a biopsy to confirm his diagnosis I started on a course of a topical steroid called Synalar Gel. The condition of my scalp at present has improved a little but it’s not cured. It still looks a little pink so there is still inflammation there. And I am still losing hair. But it’s not as itchy. He did say that if the Synalar didn’t get rid of the inflammation he would try something else – I think this was an anti-malarial drug, but I am worried about the side effects.

    I have altered my diet and I am eating a healthier diet now and avoiding anything that might be detrimental to my immune system.

    When I read an earlier blog I did read something you said about a Paul Norris who used a product called Euramin is this something you put on your scalp or is it a tablet or capsule? If I remember correctly you said you tried it but I don’t think you thought it suited you. He also said he had heard good comments about another product called Juvel-5 ? I am, of course, desperate to find anything that will help!

    Sorry to have taken up so much space. I appreciate your time and trouble to help others suffering from this awful disease.

    Moira

    • Nancy
      Reply

      I was wondering if anyone diagnosed with LPP has had any success with any treatments? My son was diagnosed with LPP when he was 11. He is currently 14 and unfortunatley has alot (almost 1/2) of his scalp hair lost. His hair loss is very noticable and really bothers him. You know- other kids are very cruel at this age. Anyway, we have tried several treatments including Kenalog injections without any success in stopping the progression. There is no way a doctor can say what the side effects of any of these treatments are to a young boy who is going through puberty. After a year of treatments, we decided to stop all treatments and see what happens. At first, it appeared as though the progression was slowing however, it appears that within the past 6 months it has returned to an very active phase. My heart goes out to him. Any advice or guidance form anyone would be appreciated. Thanks!

      • Elena
        Reply

        Oh Nancy, I feel terrible for you boy! Some kids are indeed can be cruel. I hope he find a way to turn this around and get healthy.
        As far as treatment, I have not heard of one that would prevent LP/LPP from spreading, it does not mean that there is nothing out there, I just have not heard of one. However I know of many people including myself who was able to put LPP in remission by a process of getting very very healthy. Through Healthy eating (not a conventional idea of a healthy eating) by eliminating any possible triggers of inflammation, allergies, sensitivities. By getting immune system in balance and there many people like that, on a facebook page I have mentioned here before – Healing LP, LPP and OLP Naturally, here is a link https://www.facebook.com/groups/237459489737710/.
        You also have to help your son to eliminate as much stress as possible, and learn to manage it well. He is 14, would he be into checking this blog out and maybe getting some ideas for himself of what he can do? My daughter is 15, and she is usually more inclined to listen to other “professionals” rather then her mom 🙂

        • Karen
          Reply

          I heard all the food with MSG is really bad for Lichen Planus..try to avoid all the junk food with so much flavor including soups in can and cup. Doritos and chips with flavor has MSG. Asian food has a lot of MSG for flavor. try to eat natural foods instead. “Arnica Salve” is a good ointment this helps to heal Lichen Planus I use it all over my body, you can buy it at Walgreens or Walmart..

  • Kelley
    Reply

    I too am having all sorts of trouble. I believe it is stress related and diet related. Doctors do not have a clue. It seems to flare up in winter. I am going to try a humidifier. Moira, can you keep me posted on anything that helps you? Elena that goes for you too.

  • Moira Williams
    Reply

    Sorry I didn’t reply straight away Kelly as I only put my comments above last week and I thought I should wait awhile in case Elena wanted to reply but as I noticed an e-mail yesterday asking me to reply I will try and give you a little more information. Unfortunately I can’t give any specific advice at present like Elena as I am still in the stage of trying out a number of things. This past week, since I wrote the above comments, has been a bad week for me, I have been feeling very depressed about the condition and have felt quite ‘weepy’ and I know this does not help. It did help a little to go out and try and forget about it and meet friends and try and have a laugh.

    I did have a talk to a Nutritionist in a Health Shop that supplies organic foods and supplements and although I don’t think she had heard of LPP she did suggest I increase my intake of anti-inflammatories such as omega-3. I take two fish oil capsules a day and turmeric in a capsule form which is also supposed to be a good anti-inflammatory. I also take kelp and Zinc in capsule form and biotin. Apart from those which I was told were good for inflammatory conditions and hair I also take a multivitamin/mineral and a B-complex capsule which among other things is supposed to be good for people suffering stress and depression! And I almost forgot but because I had noticed that amino acids were recommended for hair loss I also take one capsule which has two amino acids in it – L-Arginine/L-Ornithine and one capsule of Glycine. I have been taking these since about August/September. The amino acids I would like more advice on.

    I am awaiting another appointment with the dermatologist. It should have been 3 wks. ago but for some reason or another I have to wait a little longer and this has added to my feeling of desperation and even if I do see him I don’t know whether he is going to come up with a miracle solution like they have just found a cure for LPP – I am doubtful, but then I mustn’t give up hope.

    • Kelley
      Reply

      January of 2010 I was very itchy mostly on my neck and forearms and head. In April my mother passed away. After that sadness I got a very bad case of the hives. A week of steroids and it was gone. I felt good, but that next winter I had the itchy scalp again. I got in to see a dermatologist and had a scalp biopsy. Biopsy result was LLP but the non scaring type. He recommended Rogaine and trying to keep the stress down. I still had some itching and he gave me a few samples of Protopic.He said to rub the protopic on the itchy scalp. Protopic is the consistency of vaseline. I have itching on the edges… the sides and widows peak and then in the back. I rub protopic on when I can’t stand it anymore. Then the summer of 2011 I had someone work on my air conditioning and he turned off my whole house humdifier. I didn’t know he turned it off, so I went all winter of 2011 and into 2012 without humidity. I was itching again. Then that summer I turned 50. During this time I noticed hair on my bathroom floor, which had to come from my head. I was getting worried and stressed and that caused more of the above.

      I also saw a naturopathic doctor who has put me on alot of what you mention above. I take the fish oils with vitamin D, some evening primrose, aminos and also gave up all grains and sugars and dairy and I still itched. I have since added back in grains and sugars.

      All of this happenes to me and then…I turn 50! Now at 51 I am taking care of my sick dad. Boy do I miss my mom/

      My conclusion right now is….the vitamins help a lot, but I think the whole house humidifier and another humidifier in my bedroom is helping a lot. I think eat healthy all the time but cheat a little. Keep the stress down as best as you can. I exercise but I am a curvy girl. My issues may all be hormone and stress related.

      I am still hoping to stop this before it is too late. Keep the info coming. If I figure out anything else I will LYK.

      • Elena
        Reply

        Dear Moira and Kelley, I finally had a chance to sit down and go through my comments…. I have couple of suggestions – take a look at this Facebook page if you have not done so already – https://www.facebook.com/groups/237459489737710/ – it is an amazing resource and support group. Also if you have not seeing it, take a look on my resent post on LPP – http://elenaselivan.com/2013/11/11/updated-summary-on-my-lplpp/.

        I also would like to note, that going gluten-free, grain-free, can take up to 6 months to see the improvements. Depending on the severity of the issues the body is dealing with, or simply put, on how sick you are, it can take a week or over 6 months for you to see the difference, so any diet changes you make, stick with it! Give your body a chance to heal!

        I will be posting soon more info on alopecia and grains.

  • Moira Williams
    Reply

    Thank you for your replies Kelley and Elena. I haven’t had chance to go through all the information yet but I will go through it all as soon as possible. I have had to put things ‘on hold’ at the moment as I have my younger sister and husband staying with me this week but as soon as they have gone – approx. 4th December – I will look at all the information in detail.

  • Nahdhera Ori
    Reply

    Hi Elena

    I have just stumbled over your website, it has a lot of interesting stories and wonderful feedback. I am a Somatologist, dealing with skin care, I was introduced to a client who has been diagnosed with Lichen Planus, she seems to be worried about pigmentation. Are there any treatment that can be done to reduce the pigmentation or is it not going to make a difference no matter what is done? I work with Dermalogica products and they have an excellent pigmentation range, let me know what ingredients can be used on her skin to give her great results and feel confidant once again.

    Regards
    Nahdhera

    • Elena
      Reply

      Dear Nahdhera, my pigmentation went away after about a year as my diet/lifestyle changes have been implemented. My whole back and shoulders were covered in brown spots, it took a while but eliminating all potential LP triggers from my diet stopped the progression of the disease and then the healing started.
      I am not aware of any products/treatments that work for LP as far as stopping the progression or in your client’s case pigmentation.

  • Paul J. Stam
    Reply

    Thank you again for liking one of my post on papermucandme.wordpress.com. This time it was “River Congo – Excerpt 21” These are continuing post of my two Congo novels; Of Rulers and Rules and Of Chiefs and Giants. – Thanks and Aloha – pjs.

  • heartofthehome
    Reply

    I would begin with anti-inflammatory herbs and spices. Has anyone tried herbal remedies? If so what were your results?
    “Another study, published in Bioscience, Biotechnology and Biochemistry, concluded that rosemary may be an effective herbal anti-inflammatory and anti-tumor agent.”
    “Studies have shown that curcumin, a compound in turmeric, may reduce inflammation in the body. ”
    “The anti-inflammatory properties of ginger have been praised for centuries, and scientific studies have confirmed its benefits”
    “Cinnamomum cassia has been widely used for treating dyspepsia, gastritis, and inflammatory disease.” (cinnamon)
    “The anti-inflammatory properties of garlic have been proven to ease arthritis symptoms”

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    Reply

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    Reply

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  • Sandie
    Reply

    I just got diagnosed with lichen planopilaris! I’ve been dealing with a itchy scalp and my hair falling out for about 2 years now and I finally had a biopsy done and that’s what it came back as! I also had a blood test done for over active yeast in my body called a candida test and it came back positive! I’m starting to think that it all has something to do with each other! I’m thinking a yeast and gluten intolerance? Idk?

    • Elena
      Reply

      Hi Sandie,
      Yes, I agree it is all connected. I have done a ton of blood work, and still get it done twice a year, to keep up with it, and make sure there are no deficiencies. I also do testing for toxins/allergies/sensitivities once a year.
      I take supplements on and off, they change throughout the year. Same with my diet. It constantly changes according to how I feel, my symptoms if any. I do the same for my clients, constantly monitoring their progress and making changes during our check-ins.

      I myself have celiac (some tests suggest just an intolerance, and I treat it as celiac) and have had serious candida issues, plus some deficiencies. All about treating the whole body, but my biggest challenge was stress management.

      Good luck!
      Elena

  • CN
    Reply

    I’m a 28 year old male and I was just told I had lichen planopilaris on my scalp. I have noticed a significant amount of itching in my crown area but never to the point of extreme discomfort. I’ve always been told my scalp was red but I attributed it to living in FL and just having a bit of color from the sun. I haven’t noticed significant hair loss although I do notice it in the shower when rubbing my hands through my hair (10-15 hairs each shower, but then again I am actively watching for it as I used to never so I imagine that’s still pretty normal). The dermatologist prescribed Clobex shampoo and a follow up in six weeks. I’m a bit nervous to try it out but I figured as long as I paid attention to the instructions it shouldn’t be too terrible. I would say I’m extremely stress free and live a pretty laid back lifestyle. My sister uses clobex shampoo but for another diagnosis. From everything I read online I don’t seem to particurly be the target demo for this disease, but I suppose it is what it is. Any tips?

    • Elena
      Reply

      Chronic inflammation is a problem you can deal with on your own. Redness, itching goes away with inflammation. Something is off, balance is missing, and LP is just how the issues presented themselves in your case. Could be as simple as food sensitivities. I would not just rely on Clobex, address the cause before other problems present themselves. An autoimmune condition rarely comes along, if healthy balance is not restored, more will develop. I would first take out gluten and sugar. Sounds like you are fine and handling this, but if wanted to go crazy can take our all grains, all dairy, all sugars. No soy! Vegetable of any kind, protein, coconut milk/cream/oil, almond milk, berries, some nuts and some fruit – is about as crazy as one can go 🙂

  • knijia
    Reply

    Hi, what a great site! I have been struggling with Lichen Planus for almost 2 years now, and was dignosed about 5 months ago. I have scarring on my arms, neck, chest and face. I have lost hair along my hairline (that I can see) as well as my eyebrows (its looks horrible). It also effects my ear canal. My entire body literally itches at times. I have tried so many different meds and have just completed another round of prednisone about 2 weeks ago and the itching is already back. I hate this!!! I am a very busy single mom and am often told that I over exert myself trying to keep my children busy. I don’t handle my stress because I am so busy, I usually just realize I am stressed because my body will begins to do weird things. I don’t think I’m getting enough rest and maybe I need to focus on that. I tend to eat well, we hardly eat starchs/carbs, I try to eat lots of fruits and veggies, however sometimes I don’t and I havent noticed any effects on LP. Any suggestions would be greatly appreciated!!

    • Elena
      Reply

      Hello Knijia, I am sorry, as I also think that the stress aspect is the hardest to deal with. I often work with my LPP/LP clients and we will do all the nutritional things, all the supplements, even the exercise, no problem, but the mental aspect is the hardest to deal with. Make time for yourself, read, meditate, talk to someone who understands your situation. Sleep is of course is essential.

      Good luck!
      Elena

  • Rebecca Walker
    Reply

    Help! I have been told I may have LPP and I’m scared 🙁 I need some advice and what I can do to improve it!

    • Elena
      Reply

      Hi Rebecca,
      I try to provide all the information free on the website. This is a very busy time of a year for me, so I have not being writing much, but all the info is here.
      Diet, lifestyle, stress management – all need to be adjusted to get you in a better shape to heal, to get better and to prevent other conditions from developing.
      This FB page http://www.facebook.com/groups/237459489737710/
      is a wonderful resource for information and support. I am one of the an admins, and contribute as much as I can, and even my clients still find it helpful to have support of a group.
      Good luck,
      Elena

  • Helen
    Reply

    Today I have been diagnosed with lichen planopilaris. Three months of patchy hair loss and it is a relief in a way to have a diagnosis. The last gp I saw checked for head lice which was frustrating. I am under the care of a Chinese medicine doctor and a naturopath and begin treatment next week which I believe is antibiotics, anti-malaria drugs and cortisone. I have to trust that with all this, my body can heal and rejuvenate. I have to stay positive because the thought of losing more hair makes me so distressed. I’m so happy to come across this page and read so many stories. I will head to the Facebook page for some dietary hints.
    Thanks all.
    Helen

    • Elena
      Reply

      Hi Helen,
      It is scary how many stories of new LPP/LP diagnoses I hear. More and more people contact me daily to share their experience of being newly diagnosed with a form of alopecia. Sounds like you are on a right track working with a naturopath and an Chinese medicine doctor. Good luck and please keep us posted on your progress.

  • Alka Nand
    Reply

    Hi Elena,
    I was diagnosed with LPP and LP a few months back. It started with just one patch right on top/back of my scalp but then I started seeing small reddish pink patches in a row. I also had a rash just like yours on my shoulders and back – very similar to yours. The doc had a biopsy done and it was diagnosed as LPP and LP. I got 3 rounds of injections on the head and a month of prednisone starting with 40 mg and then tapered down over a month. I hated it – I put on weight and felt bloated all the time. When the LPP was still spreading and the doc wanted me to take another round of Prednisone I decided to take a second opinion. This time I went to a doc who is a professor at the UTSW Medical College here in Dallas. He conformed the same but thankfully instead of steroids he prescribed cellcept. I have been on it for 3 weeks now. I came across your site and others and realized I had to change my diet and lifestyle. We eat very healthy as it is so I am even more surprised that this happened. I have started detox diet – no sugar, alcohol, processed foods, gluten, meat, chicken, fish, nuts etc. I have been trying to eat just veggies, fruits and quinoa, brown rice etc. I have even sttopped Tea that I loved having twice a day. I have started seeing some improvement in that the spots look less inflamed now. Even while I was taking prednisone I had developed more rashes in my thighs and legs. Fortunately so far my rash nor my LPP has been bothersome. But ofcourse I have night ares that I will go bald or that it will progress …
    The information on your site has been veryyyy helpful. I was wondering if you knew a good dietician here in Dallas? I would be verrryy interested in knowing what was the diet that u were on that u started seeing changes in a week.
    I am also consulting a Homeopathic doc and have been taking meds for 4 weeks now.
    It is all quite depressing…but I am only hoping that since I have started making changes it will get under control.
    Thanks!
    alka

  • Kannan
    Reply

    Hi Elena,
    Good site. My wife is diagnosed with Lpp for scarring alopecia for the past 8 years. We have tried allopathy, Ayurveda, siddha medicines. Nothing worked. Now she is trying yoga with homeopathy medicines. I am confident that something will turn around from this site for recovery.

    Thanks,
    Kannan

    • Elena
      Reply

      Hi Kannan, Thank you for stopping by! Yes, unfortunately in my experience this is a whole lifestyle and mental shift. The hardest part is mental, emotional aspect – to just let go, allow it, stop fighting it and just start living the lifestyle that is not conducive for LPP to flourish.
      After about 5 years from diagnosis, something sifted. I got to the point where I now just live the healthiest lifestyle I can (on and off, I slip) but I do not blame myself, I am a human, life happens, things shift, and eventually I get back on track. But most importantly I no longer mentally attached to LPP, I stopped looking at my scalp on daily basis, checking it. I just know that I am doing the best I can to prevent it from spreading, or not 🙂 – you just have to be okay with whatever happens, I am now at peace with an idea that potentially one day I still may have to wear a wig, but imagine the amount of stress and anxiety I gave up! And this is the most important work I have to do wit clients with LPP, especially women – to find peace. The best thing you can do is just support her and listen – and sounds like you are! 🙂 But this is the hardest place for most to get to, yoga, meditation, spirituality, letting go – everyone has their own path. 🙂 good luck 🙂
      https://www.facebook.com/groups/237459489737710/ – you also may want to join this support group on Facebook – great info

      • Moira Williams
        Reply

        Good advice Elena. I like what you say.

  • sue
    Reply

    I was glad to find this site, but sorry to see so many with this “rare” disease. In 2 yrs I lost permanently nearly all of my beautiful hair. The psychological aspects are so hard to deal with, but we must try to be brave and be grateful for what we have and learn to see ourselves in a new way. My heart goes out especially to the very young sufferers. Thanks to all who post their info here for us to try.

  • Nerida
    Reply

    Thanks for the info. I have all three forms of LPP and the other day my demo said that I may also have AA. I lost my body hair 5 yrs ago, my scalp started a year ago (so itchy) and I lost my eye brows 6mths ago. I’ve was diagnosised with ‘general’ autoimmune disorder 20yrs ago (Im 37). I’m all for healthy lifestyle but what more is a girl to do. Exercise, check (love my treadmill) I follow an anti-inflammatory diet (vegetarian, no gluten, dairy, potatoes, tomatoes, chillies, caffeine, chillies, goji berries, etc) I drink herbal teas, but I do have soy milk, I have limited processed foods. My idea of processed food is rice crackers and humus that I didn’t make myself. I eat immune boosting foods, such as some fancy powdered turmeric, chi seeds, pumpkin seeds, ginger, citrus. I take magnesium, pluquenil (just started) and novasone (just started), I also eat hemp seeds for omega. I made my husband get the snip because I didn’t want to take the contraceptive pill anymore and my immunologist also was keen for me to stop taking it. I have hemochromotosis, chronic low white blood cells (but my counts have been good for ages), positive anti-nuclear antibodies, drug allergies etc.. Stress isn’t really a big factor but I am surprising a little heavier than one would expect given my diet and exercise which is a little stressful as I use to be rather nice. I started putting on weight after my second child which is also when I noticed the first signs of LPP. I feel that Im doing all I can yet this hair loss on my scalp isn’t slowing down. I’ve always been one for long beautiful hair (previously down to my knees!) which I now have cut short (small of my back). It has always been my best feature. So I’m not that happy about loosing it. Your thoughts or suggestions would be appreciated.

    • Elena
      Reply

      Hi Nerida, thank you for your comment and for sharing. Sounds like you are doing everything by the book. The only thing I can think of is potential food sensitivities, where you may be eating very healthy, but there could be one or two food items that are causing inflammation and triggering the symptoms. I had to go to get tested for every food item to narrow down foods that I have to avoid. For me it is grains, not gust gluten. I can have some on occasion, but not too much.

      Also rotating what you eat is very important. For example, salads are great, but making a salad with spinach every day is not good, have to rotate your greens between kale, arugula, watercress… And same goes for other foods. I am not at the pint, after 6 years, where I can eat fermented foods again, mushrooms, and any type of veggies. But again, rotating, making sure I do not have too much of a same good thing.

      What do you think?

      • Nerida
        Reply

        Ta. I’ll check I’m rotating my foods, I hadn’t really thought about that before. Allergies, thanks I’ll get right on that. I’ve done elimination diets before but that was 20yrs ago so probably time to test again. I’ve done the ‘food detective kit’ recently but it is limited in what it tests. I guess I will do an elimination diet and monitor itch and hair loss. I’ve had the scratch test recently but there wasn’t anything I was allergic too. My immunoligist is big on elimination diets but they do take a long time. Are blood tests that can test a large range of possible allergies?

    • Anna Neumann
      Reply

      Hello Nerida, when I read all the things you are dealing with, my heart goes out to you, and I hope you’ve found a way to feel better since posting the above. One thing I thought to suggest, especially since you say your weight gain and LPP diagnosis came after your pregnancy, is to have yourself tested for thyroid disease. It may have already been done, but most doctors only test a couple of superficial markers, leading them to miss a fairly common thyroid autoimmune condition called Hashimoto’s Thyroiditis. To detect this, the doc has to test for TPO antibodies and Tg antibodies, and for the levels of your free thyroid hormones in your blood (called free T4 and free T3). It’s worth testing for this disease, because 1) it also contributes to hairloss, and 2) more importantly, if you have low thyroid hormones your body has to work incredibly hard, and you could feel a lot better by simply taking thyroid hormone replacement meds.
      Sorry if you’ve already done all this! If not, I really think it’s an avenue to explore, and a naturopath-type doc would probably be the best option.
      My LPP diagnosis came close on the heals of my Hashimoto’s diagnosis. Finding the right type and dose of thyroid hormones has been a long journey for me, but once I did, my LPP seemed to improve, too — although it still flares up and I think that stress management and food sensitivities are still super important to pursue. That’s the mission I’m on right now, although I might run out of time and hairs before I get it all figured out… :-/
      All the best!

  • Pat
    Reply

    I had lichen plano scalp changed my diet. Added tumeric to what I eat and began exercising. Prayed my scalp does not itch anymore and there are tumeric shampoos. Also stay away from gluten .God bless

    • Elena
      Reply

      Thank you, Pat! Just what you said – it is not just one thing – it is a lifestyle change. Good luck 🙂

  • leeona russell
    Reply

    Hi there, I’ve found this site and everyone’s own experiences a brilliant help. I’ve just been diagnosed with LPP today. I never seen anyone about it until it was really bad! I’m a 32 year old hairdresser, coming to terms with loosing my own hair was difficult. Having to hide the bald patches & redness wasn’t easy. I put it all down to stress as nearly 6months ago I lost my my little girls daddy… love of my life for 13 years. Was terribly tragic & keeping strong for my daughter was and still is the most difficult thing I’ve ever done. I think the sleep deprivation, lack of food, exercise and general upset and worry is the reason for this. I’ve always eaten extremely healthy and attended fitness classes 3/4 times a week. I intend to get back to fit and healthy again. It will be interesting to see if it makes a difference in months down the line. I’ve been given Hydroxychloroquine and a mouse for my scalp but not sure on the name as its been sent to my doctors practice. I’m so glad I’ve found this, thank u leeona.

    • Elena
      Reply

      Dear Leeona, I am so glad you find the blog useful and helpful! Thank you for reading and for the comment. After all the years of research and speaking with other LPP patience, I am 100% sure that it is stress that causes it, and being able to manage and live with stress, is a must for us to manage and live with LPP. Stress is always here, around the corner, stress is our reaction to external events in our life. I think that ones we can be okay with those events and stop arguing and fighting what is happening, but just go with the flow, accept and be okay with whatever feelings are coming up for us – we will react less negatively to life. I know easier said than done, but it is a path and it takes time.
      Good luck and God Bless! Elena

  • Suzanne
    Reply

    Hi Elena
    I hope you still read this blog. I was just diagnosed with LPP this week. I am asking what diet you used yourself to get it under control. I read through the blog and don’t see what you followed. I am terrified of the treatments like everyone else. I have long hair(more than half way down my back) and already have thinning on the top center of my head. You can see through my hair. I went to multiple doctors this year over an 8 month period who did not diagnose it. I finally had a biopsy at a female dermatologist office. I just started taking minocycline antibiotics only to find out I may be allergic to it. My health took a real hit early in the year and no one could figure out what happened to me. I am a small person that worked out three times a week and ate somewhat healthy. I appeared to be healthy and things came crashing down one day. I did have stress last fall when my only son went away to college. I was a stay at home mom so it was a blow to me. I knew it was coming, but still a blow to me. So I am asking about the diet and any advice on stress, lifestyle, etc. I still try to go to the gym three times a week but the sweating seems to make it worse some days. Thank you so much for this blog.

    • Elena
      Reply

      Dear Suzanne, thank you so much for contacting me. I was traveling most of November and will be away in December as well, so I have not had a chance to reply to you right away, my apologies.

      I am working on updating and restructuring my blog, but in a meantime, the best way to find info pertaining to LPP or LP would be to use the search box withing my blog. There you will see posts about my diet, my lifestyle and stress management.

      Good luck and please let me know if you have any questions.
      Elena

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