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Scarring Alopecia: Lichen Planopilaris

Discussion in 'Tell Your Story' started by paperface, Aug 22, 2016.

  1. paperface

    paperface New Member

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    Hi all,

    I just had an amazing holiday vacation and the day after I had an appointment to pick up my scalp biopsy results. The diagnosis turned out to be Lichen Planopilaris.

    I only started noticing my hair loss about 1 year ago. My boyfriend says he noticed it more than 2 years ago, but I was in denial, and also I couldn't really see it, because it was at the top of my head, and I thought it was just my hair was weird because it's curly, or because that day I didn't tidy it properly...

    In any case, I started investigating with my doctor in November last year. They first thought it could be low iron. I had tests, which showed it was low, but not so low to cause hair loss. Then moved on to visit the gynaecologist, since they suspected I might have PCOS. I had all sorts of tests, and it was confirmed I was clear on PCOS, which was a relief. They also gave me the POP, and I took it since January 2016.

    In March/April hair loss became much worse, every time I touched my hair I had a handful of hair. I got very worried and asked to visit a dermatologist. They said POP couldn't cause hair loss, but I quitted in June, as it was the only change in my life in the last months and blamed hair loss on it.

    I went then to the dermatologist and she recommended a biopsy. The appointment for it wouldn't be until end of July, so I decided I couldn't wait that long and went to a private clinic in London called The Belgravia Centre. There, a trichologist had a look at my hair and said I had Female Patter Hair Loss. It look quite plausible, since in the pics you could see some small smooth areas and miniaturised folicules in the areas where Female Pattern Hair Loss happens. She gave me minoxidil 5%. I applied it twice daily for about 5 weeks, until I had the biopsy done. Then I stopped until the biopsy wound healed (3 weeks).

    I knew about Minoxidil's shedding, but I couldn't really notice more hair than before was falling. In any case since I stopped taking it, I have noticed not much hair is falling anymore, which made me really optimistic. ...Until I had the biopsy result with a Lichen Planopilaris diagnosis :(

    The dermatologist didn't even take 2 minutes to explain. She gave me some scalp cream with steroids to take for three months, as well as mild antibiotics. I am seeing a private Dermatologist in London that seems to know about this condition, which the hope it will make things look a bit more optimistic. I have lost quite a lot of hair, specially on the top, but I still have a lot on as well. You can notice there are areas going bald, and some days looks alarming whilst other times I can comb over and hide it a little bit.

    I am quite shocked about these news, and so my boyfriend is. I feel terrible I didn't go to the doctor earlier, and also looking at the future, it all seems very bad. There is really no cure for this, and I can't afford to lose any more hair. I don't know if the treatment is OK, one can't take steroids for life, they have too many side effects. I called the Belgravia Center to tell them they misdiagnosed me, and they said in my pictures there is no sign of scars from LPP, and it's imposible I have that condition. That made me slightly optimistic, but I think is because I need some source of hope. Perhaps I have both conditions, LPP and Female Patter Hair Loss. I am really devastated and everyday when I wake up in the morning I realise it is not a nightmare and have a very hard time.

    Is there any one else out there with the same condition? Is there any hope?

    I am happy to have found a network like this where I can freely share my feelings about this. Thanks whoever created it.
     
  2. RainT

    RainT New Member

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    Hello paperface, I have had lpp since 2012 and have had steroid shots in my head given doxy and the antimalarial drug. Have not taken any medication for about a year and a half. My advice to you is get bloodwork and thyroid checked. Low vitamin d and hypothyroidism are both problems I have. Steroids and pills are a temporary fix. Would be happy to talk to you. This forum makes us know we are not alone with this rare disease. I hope you have supportive loving people in your life. Take care.
     
  3. mycurlyhair

    mycurlyhair Experienced Member

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    Sorry to hear of your diagnosed. There is a facebook group for LPP with more info and others maybe even in your area. This site is great and I love it but for our condition having a larger network really helps. PM if you want the site or just search it on FB.

    RainT Has it helped you since working on your D and thyroid? I just bought some Iodine and will be taking that soon.
     
  4. RainT

    RainT New Member

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    Hi mycurlyhair, Is your vitamin d level over 50? I still cant get it over 30. If there was a way to decrease inflamation in our hair follicles at least we could keep the hair we have. Thyroid meds made no real difference. Is your scalp still red? Do you have any new hair regrowth?
     
  5. mycurlyhair

    mycurlyhair Experienced Member

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    I just had it tested again yesterday. It has NEVER been over 35. My scalp redness comes and goes but its usually not that red. Just lots of flaking. I have some growth and alot of loss too but holding on. I have some small scarred spots but nothing huge.
     
  6. paperface

    paperface New Member

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    Thanks for your comments RainT and mycurlyhair :)

    RainT, why did you stop the medication after one year and a half? Is it because you became asymptomatic or just decided to stop and check what would happen?
    My dermatologist ordered some blood tests, but I never got the results. I don't even know if they included vitamin d or not. The NHS is not working very well in this case and it's making all so painfully slow. I think my thyroid is working just fine from other tests before, but I'll ask my doctor to double check.

    I try to stop myself from looking online, because I get very nervous when I see pics and hear how people are getting new bald spots and so on with not much hope at all. However I do it from time to time, and I've discovered this site which might be of help: http://www.carfintl.org

    They have a newsletter and support groups and mailing lists, although I haven't really received any mails since I joined. There are supposed to be local meetups, but for London there is no set date yet.

    There is also a list of doctors in different countries which are supposed to know about LPP.

    I visited last week a private dermatologist in London which seemed to have experience with LPP (this guy https://www.youtube.com/watch?v=bWmn44u0y5I). I couldn't show him the results of the biopsy, but he had a look and said I probably had Female Patter Hair Loss as well as LPP. HE recommended to go on with minoxidil and said I could not take the steroids and take the antimalarial drug instead. We are waiting for the NHS to send the results for him to confirm I have LPP. He mentioned he had other patients with LPP, so I think I'm on the right place. I'm also trying to get a referral for an NHS dermatologist that is in the CARF's list.

    The thing is my scalp is red on the top, but it doesn't really itch much, and it also is not painful except if I brush it (which I don't really need to). The thing I've realised after the diagnosis, is that my scalp and skin in the head in general is quite hot when I touch. I think I have lost hair all over my head, specially on the top and sides, but I don't have the bald spots I see on pics, so I quietly have some hope I have a light version of LPP.

    How is it on your case? How far had it gone when you went to the doctor the first time? Do you mind if I ask you how old you are? I became 33 the week I for the results. I keep on seeing online the average age is 40-60, which makes me worried that I'm starting so early.

    It's great to find people you can ask and talk to :) Thanks for taking the time to read :)
     
  7. RainT

    RainT New Member

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    Been putting off replying to you because my hair loss is progressing. I have had LPP for almost five years. Doxycycline, steroid shots and panqual may have slowed the progression of this disease but it is like prolonging the end result. I am 59 years old and understand that hair thins with age but baldness is hard to accept at any age. Hopefully your doctor will be able to save your hair or even better regrow it. Would like to hear how you are doing and wishing you well.
     

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