Any one been diagnosed with Lichen planopilaris (a form of lichen planus)?

Went to the dermatologist a couple of weeks ago because my hubby kept saying he could see my scalp (I usually have quite thick hair and always have). A biopsy was done and the results were 'scarring hairloss' or in other words lichen planopilaris. He wrote script for steriod creme and says see you for follow up in 2 months! Before I could even ask any question he was gone-total time spent was about 2 minutes. I hate the fact that I have to go in and get a diagnosis and then to have them do this type of thing. What the heck? Anyway told the assistant I wanted information on this as I wanted to do some research on my own. Got a pamphlet. It states that it often begins with small bumps on the scalp, redness, itch and scaly patches can develop. Scalp may feel tender or burn. I honestly do not believe I had any of these symptoms. My scalp does itch from time to time but not always. Yes, my hair is thinning but I am not sure there is actual areas where there is no hair or hair growth. I did read that it cannot always be a correct diagnosis without other testing. Like allergic reactions, etc. None of these doctors now days give a hoot on what the real cause is just give you meds. I do, as I do not want to put anything on or in my body that masks the problem, I want it to help! If anyone has had this disease please give some pointers. Thanks.

9 Replies

  • Hi

    I was diagnosed with lichen planopilaris some time ago.

    The problem with this condition is that the symptoms can be different in each case. I now have the burning and itching but didn't when first diagnosed. I just noticed that my hair was thinning. Some people lose hair in patches, my hair loss is diffuse.

    The main difficulty with a diagnosis of LPP is that it's often given, as in my case, when other conditions have been ruled out. My doctor thought I might have Lupus to start with as the scalp looks similar in both, so it would be good to hear from your doctor that this has been considered. The bumps can often only be seen using a microscope so you may not notice any when you look in the mirror. Also, the way hair loss progresses can be quite slow as your hair may not 'shed'. In my case, my hair falls out at the same rate as anyone elses, the difference with LPP is that the immune system attacks some hair follicles, preventing a hair to grow in the affected follicle due to scarring. Therefore, each time the LPP is active, a percentage of my follicles in the active area will scar. Again, this is different for each person but the basic principle of the condition is the same.

    If it is LPP, unfortunately there's not much out there to help for most people. If you are on Facebook, there is a support group called 'LPP, Let's Put Out The Fire' which can have some helpful discussions and latest medical/scientific updates.

    Best of luck to you and I hope you find the answers you need.

  • Thanks, I wrote a reply to myself I guess below! I am so grateful for this site and all help I have gotten from it.

  • Hi guysgram to be honest I would say if your hubby has seen your scalp and you've had a biopsy - results usually correct and done by a pathologist I would say in your case the diagnosis was correct. Having said that all of us are different and don't always experience the same symptoms that often a doctor will go 'by the book' about. For instance I had a lot of lower back pain for years the area on my back very red and because I used a hot water bottle for the pain the doctor, two in fact insisted it was because if the h.w. bottle and sent me to physio at the hospital where an 20 year old told me over 60 how to stand up against a wall and pull my neck in! And other excersises yawn. Not until I had biopsies for lupus was it finally discovered from a biopsy I had lichen planus on the back though according to the pathologist it was gone now and the redness residue scaring. You are obviously unhappy with the result so if I were you I would ask for another opinion or biopsy to confirm. Good luck.

  • Hi, I've also been diagnosed with Lichen Planopilaris following a scalp biopsy. I had noticeable smooth bald patches about the size of a 10p and overall areas of thinning. Over the last 3 years I've had 4 lots of steroids, 6 months of antibiotics, 6 months of anti malaria medication, Dermovate scalp lotion and minoxodil. The next stage of my treatment is anti rejection medication which comes with far too many side effects. If it was me to be honest I would not repeat this process. My GP will not diagnose me with thyroid problems despite having high thyroid antibodies so I'm helping myself. I've had private BH bloods done and with the excellent advice from this site I'm taking numerous vitamins and I'm gluten free and starting to feel a little better. My hairdresser thinks my hair is a little better too. I've said all along this journey that my hair loss is due to thyroid!! Good luck in your journey. This is the first post that I've felt I can offer advice on so hope it helps.

  • I was diagnosed with lichen planus in the mouth some years ago. This related autoimmune condition is now non symptomatic. Reason? I have changed my diet so it is much less inflammatory. No wheat or most other grains, increased omega 3 by including much more oily fish plus a supplement. No milk (I use almond milk instead), butter from grass fed cows (kerrygold), good cheese. Try reading Wheat Belly by William davis. Good luck!

  • hi hilaryjm. I am very interested in what you say about diet and olp as i have it. I have been gluten and dairy free for a number of months. How long did it take for you to realise that the olp had gone? Are you strict with all grain removal? Thank you

  • Hi @hw7342. My mouth was really sore, and there were certainly foods I couldn't eat without a lot of discomfort. The condition was diagnosed by my dentist. And he also noted the improvements. I gradually realised the soreness was getting less and less, and then I found that the foods I hadn't been able to tolerate were now bearable. I stopped the wheat (not just gluten) etc as I had various autoimmune conditions including polymyalgia and there is a known link between some grains derived from grass and autoimmune conditions. You need to exclude absolutely anything with wheat in it, even if you aren't celiac and don't experience digestive symptoms. Also Rye and barley, but rice seems less of a problem, though it will still be a problem if you are concerned about carb load. Good Luck!

  • Will do, thanks.

  • Thanks to all for your feed back I so appreciate it. No I was not happy with diagnosis and after reading about it wondered why I really did not have any symptoms other than my hair loss and scalp itchy from time to time. I have been on thyroid meds for over 20 years now. Only changed with the addition of Lithythronine last November. My hairs has been going on for quite some time however it did start increasing within the last 1-2 years (think that's when antibodies were going nuts). It seems weird because I went to dermatologist earlier this year because of those tiny blister like things on the palms of my hands(they looked a lot like the photos I have seen of the skin type of this disease). They itched liked crazy and would break open from the itching and then when healing I would have scaly patches and the area where they were was thicker. He looked briefly at them and said 'eczema' gave me steroid creme and that was that, now I wonder if it was a form of this stuff instead. The thing that bothers me the most is that they do not want to find out why, they just give you a pill or cream and send you on your way. I have been very watchful of my diet over the past 1 1/2 years and have been taking supplements also to help. I am planning on having private blood work done to make sure as best I can that my levels are good. I have been trying to get an appointment with an allergist also to see what I am allergic to. Again, thanks for the feedback I am so grateful to have found this site and the help it has given me!

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