Is there anyone who has Lichen Planopilaris?

Discussion in 'Hair Loss Causes' started by kolina, Nov 21, 2011.

  1. kolina

    kolina New Member

    I am new diagnosed in October. I would love to here from someone who has this same disease. I am scared and depressed at the same time. My dermatologists want to start me on Placquenil. Is there anyone who can tell me if they have had the eyesight side effect from that drug. I just visited the eye Dr. today and went through a bunch of testing before I start that drug. Please help I would love to hear from anyone.
  2. Kif

    Kif New Member

    Hi Kolina,

    I was also diagnosed in October with what *might* be Lichen Planopilaris (LP). I say might because I had a scalp biopsy which showed minor inflammation consistent with LP, but it was not significant and there was no scarring present on my scalp. What are your symptoms? Ive read LP causes patches of loss which merge, my loss is more of a thinning over the top front part. When i saw the dermatologist my scalp looked a little pink and i have subsequently notices patches of pink, like spots but not raised. I have had what i thought were spots on my scalp too which i mentioned to the Dr but she seemed the shrug it off.

    Anyway she prescribed me clobestol propionate (Dermovate/Olux) which is a potent topical corticosteroid to reduce the inflammation. I think it has reduced the pinkness i saw back in Oct but possibly may have caused acniform spots, more than what i was seeing in Oct so overall i don't know! Im not even convinced I have LP! From what i can tell Placquenil is used to treat arthritis or lupus; the latter i know can cause hair loss. Perhaps ask why your Dr wants you on an antimalarial rather than a steroid?

    Its been a month or so since you posted, id love to know the outcome of your treatment if you started it.
  3. kolina

    kolina New Member

    Hello Kif, Sorry to hear that you also have possibly LPP. I did not have scaring much, I had a pink area on the top of my scalp and some bumps that were raised. I did have some silver flaking he said that was around my hair shaft. Nothing that i really noticed (as far as flaking like dandruff goes). Well I did start on doxycyclin 2 times a day for 1 1/2 months. I never did start the placquenil, nor do I plan on ever taking that drug.
    What I did was put myself on a total anti-inflamatory diet, also no dairy, no sugar, no gluten, no preservative or processed food. I lost about 17 lbs though. I am stablized now and I feel great. I stopped my oral meds and I only use dermasmooth twice a week on my scalp. It is a mild cortizone with peanut oil. I wear a shower cap to bed and wash my hair in the morning with T-Gel. So far it has been 3 full months and all my symptoms are at bay. I joined this site on Facebook that only people that have our disease are on it. It has been so very helpful and people actually reply right away. This site has been hard to find others with our same disease and they do not answer questions. My Dr. is in awe of how well I am doing. I do not have hair loss much at all. I do have a small bald spot where they did the biopsy though that does not have hair growth. I feel great and healthy from my diet. My head itches every once in awhile but i do not have the pain any more. You might want to get a second opion with another dermatologist. For yours to just not look into your bumps is silly. Our disease is from the inside. No matter what our symptoms are, our disease will still progress. Even though things might seem at bay. That is why I decided not to put any synthetic drugs into my body. It is bad enough just doing the steriods on my head. When the Dr. gave me shots on my scalp I told him that I heard that it thins your skin. He did agree with me that over time it will thin your skin. Well you need so much thickness for a healthy hair folicole that if it is thin your hair will fall out. So since i started my diet I have not been inflamed. I am so thankful for that. You might want to join the facebook site. ( LPP Lets put out the fire) Just ask to be a friend. There is now 57 people on there and we all have the same disease. So much info there and every one is so very helpful. I hope this helps you and hope to see you on there. Our disease is so very rare that the Dr.'s really do not know much to treat this. We are all trying new things. I just feel I rather heal it from what I put into my mouth. And so far it has been working. My Dr. is amazed. I have many personal friends that are Dr.'s too. Just remember that when you go to the Dr.'s they want to give you pills and creams to make you better. But some of that stuff makes you have other side effects that are not pleasant. I hope this helps you. Take care and feel free to ask my anything. Where are you from? Kolina
  4. Electra

    Electra New Member

    I have LPP

    I have it as well. Diagnosed 1/2012 and still fighting. Anyone else out there?
  5. mycurlyhair

    mycurlyhair Member

    Hi Electra, I was also just diagnosed with this also. I am unsure I have it. What symptoms do you have? I have itching and some burning and shedding, I also have dryness around my hair follicles but that is about it. My biopsy confirmed LPP. :(
  6. Electra

    Electra New Member


    Hi CurlyHair.

    I have a pretty bad case. I have red patches, itcing, pain and hairloss. I was diagnosed in January.

    My personal belief is I would be very proactive in treating it. If something isn't working, move onto something else. Make sure you have a really good doc who has treated this before.

    Read this site.

    I've done topicals and Plaquenil since Jan. Methotrexate May-Early Aug, Steroids on and off. Now I am going back to the doc today to pick a new therapy. Probably Actos. Its a diabetic drug that seems to help with the lipid issue. May or may not work.

    There is a facebook page for LPP, LPP put out the fire. Its decent. There are several folks on there who are proponents of a Paleo diet for this condition. There may be something to it. I personally was also diagnosed with Celiac disease which requires a gluten free diet. The paleo diet is gluten free but takes it to grain free./

    Do you have any stomach issue? Any other autoimmune issues?
  7. mycurlyhair

    mycurlyhair Member

    I was just going to mention the group and the diet to you too! :) I do not have much stomach issues right now but did more so up until 5 months ago before I was having HL problems but that is because I changed my diet and cut out junkfood/fast food/and processed foods. I have been doing better in that department. I am not sure I can do the paleo diet as I wont eat much and also have to cook for my teen daughter and it will be really $$$$. Wish I had a "cook", wouldn't that be nice! I do have autoimmune issues but my ANA test always are fine! :(
  8. Electra

    Electra New Member

    Hi Curly Hair,

    I am on the LPP facebook site, If you wish to chat more on facebook, feel free to friend me. If you go to the LPP site, I commented on the recent post about feeling dehydrated/thirsty. My last name initial is W. I'd rather not share my real name on this list.

    Hoping to get on the network but working through getting a password. I saw there was an LPP section on there as well.

  9. mycurlyhair

    mycurlyhair Member

    Know what is funny? I started that post! ;) I will message you. That is not my "real" facebook account just for privacy reasons, I only use it for that site. Wish I didnt have to be so discreet!