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.
Any one been diagnosed with Lichen planopilaris... - Thyroid UK
Any one been diagnosed with Lichen planopilaris (a form of lichen planus)?
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.
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.
where you on PLAQUENIL antimalaria medication?
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!
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!
i am being treated for LICHEN PLANOPILARIS on my scalp with PLAQUENIL 200MG taking one tablet daily. have been taking them for 2months and am seeing positive results in my hair growth. its true i have to take blood tests and an eye test every 6months but at least,not for nothing. i recommend you to talk to your dermatologist about this medicine.my dermatologist told that it worked on patients with the same condition and it seemsit is working on me too. wish you the best ofl uck
I actually think I may have been misdiagnosed. My hair is no longer falling out and I am on T3 only now for my Hashis. I have seen a real difference since coming off of Synthroid after almost 21 years. Thanks for the input.
So glad to hear this! Has your hair growth also returned to normal? I’m asking bc about a month ago under very similar circumstances I noticed that my wife’s scalp was becomeing visible. Upon closer look she had over the course of a couple months shed quite a bit of hair. of course we were both in a panic. She went to her regular Doctor who ran bloodwork and it all came back normal. She only ran a TSH and T4, but not a T3. She was then referred to a dermatologist who did a biopsy which came back as “suggestive“ of LPP, although without any scarring. We then went to a 2nd dermatologist who we have used for years, who immediately began steroid injections to clear up the inflammation so hair regrowth can begin soon. But something isn’t adding up. The dermatologist was actually quite surprised to see LPP, as he originally suspected telogen effluvium brought on by stress. Again he was going off the bloodwork done by the regular doctor. After reading your story, and taking into account my wife’s family having a history of thyroid problems, I have since read that it is possible to have borderline normal TSH and T4 and still have either hyper or hypo thyroid issues. Apparently they should have done in a T3 test. My plan now is to get her to see an endocrinologist to really give her a good look. My wife’s biggest fear right now is that we will go through all this effort to get her hair to regrow only to have it fall out again because of a lack of concrete underlying cause. She would much rather it be a thyroid condition that is treatable than LPP which can apparently progress and is not curable. Hence why am also asking if once you pinpointed the issue, did your hair return to normal?
I’ve just been diagnosed and may start on the same medicine. Is your hair growing back in the bald spots?
that is oh so very thin.glad you are feeling better . can you please tell me how you use T3.
HI I was diagnosed with LP and as you said no special attention from my derm, andaslo no biopsy done, but i really did have red scalp and bumps, but not much itch. my hairloss was difusing.i was given PLAQUENIL 200 MG DAILY TO SUPPRESS THE CONDITION,which am still on, and must say that it helped me a lot, but not much regarding hairgrowth. my hair has grown very thin all over but at least i did not continue to have any shedding.
Hi all,
Appreciate this is a old post but wandered if anyone could help?
I have had inconclusive results from a scalp biopsy on several smooth bald patches on my scalp. The dermatologist said he would treat it as Lichen Planopilaris and gave me dermovate to use on it and also gave me steroid injections in my head in September and December but now waiting on next visit which I dont know when will be. I have always had psoriasis of the scalp and recently this seems to have stopped and these bald patches appearing. One appeared a few years ago but biopsy didnt show anything, so was told its scarred and nothing can be done. I had new patches develop last year and now having these injections all over my head but cant see any difference. Has anyone had scarring lichen? Has any advice on what treatments may be next if the injections dont work? It makes me feel very low and ugly and my hair overall has thinned a lot and breaks.
Ive had all the blood tests and i am only needing to take iron tablets to get my level to 100.. but nothing else was negative. I feel like they dont take it seriously enough.
Any advice/experience would be much appreciated
X
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