Lichen Planopilaris and discoid lupus

Discussion in 'Open Topic (General)' started by mopy, Aug 16, 2009.

  1. mopy

    mopy New Member

    Hi Ladies,

    I'm new, and this is my first entry.
    Hope you all are well, and are not thinking too much about your hairloss.
    I have lichen planopilaris (LPP) and discoid lupus (DLE) and am wondering if anyone else out there has any of these scaring alopecias? If so, what is your current treatment and prognosis? Did you experience excess sheading? Did you have any hair growth? Do you know how you got LPP/DLE? I got mine from a drug called Enbrel. Started out as drug enduced lupus which reversed 3 months after I discontinued the medication. While on Enbrel I got a sore on the top of my head which turned into an infection that couldn't heal due to being on Enbrel. The sore was biopsied and came back as discoid lupus, lichen planopilaris and folliculitis decalvins. The doctors favored more towards DLE. Well, the sore left scaring alopecia. I had enough hair to cover it but just recently I have new activation and am loosing my hair and no longer have enough to cover the one scared area and the rest of my scalp is thinning. New biopsies were done and came back as DLE and LPP but now the doctors are favoring LPP. The doctors think I have a combination of both. What can you tell me about DLE/LPP? Most of the pictures available on line only show burned out stages and do not show what the scalp looks like when it is in an active stage. I don't have any itching but have burning or tingling. The scared area did heal about 6 months ago but has since flared. Is this normal for DLE or LPP? I thought once it burns out then it will not return in the same place? Any info you can provide would be very appreciated. Thank you,
  2. arts

    arts New Member

    Hi Mopy
    I am a new member here and also new to this whole minefield of hairloss.
    Last month I was diagnosed as having lichen planopilaris.
    In the affected areas my scalp feels smooth, almost glossy. These areas are down both front sides of my scalp within the hairline.
    I have tingling in my scalp and a slight amount of itchiness but I am sure it is made worse when I am thinking about it - like now!! The hair on the top of my head does feel less dense and I know the frontal hair line has regressed a little. Also I have bald patches on my eyebrows, sideburn area and both sides of my cheeks!
    My dermo has given me steroid ointment to rub onto the affected areas and if this does not have affect after two months then we are looking at starting plaquenil and an oral steroid. I am not sure if I want to go on this medication but if it arrests the hair loss till the lpp subsides it might be worth it. How long that will take is the big question ... and this is what scares me to take the medication.
    My question for you or anyone else that maybe able to help is....
    Is it ok to dye your hair? simple but scary now!
    My dermo said I can use semi permanent dyes but I am scared and reluctant as I do not want the situation to become any worse. :( Anyway I am not sure if it will cover the grey properly and hence make it look worse. Dying with permanent colour in the past has made my scalp react with itchiness but then I did not know I would get this hair loss so I continued! Right now all hair products seem to make my scalp reactive. I do not know the cause of my lpp only that I have it!
    I am sorry I cannot be very useful to you but the more we talk this out the more we will learn.
    Hair loss is a strange thing .......... When I walked out of the drs surgery I did not think that later I would have an overloaded surge of different emotions! So much so that part of me says go grey, shave your head (although I do not have to take that step yet), be brave as my hair does not define me, and the rest of me grieves! :confused: I am very fortunate to have a very supportive husband and family. Also I am glad to find this forum from which we can all learn.
    Thanks for listening. Arts
  3. mopy

    mopy New Member

    Lpp

    Hi Arts,
    I'm sorry to hear you have been diagnosed with LPP.
    There is another site that you may find useful and it is www.keratin.com.
    This site offers information about all forms of alopecia along with chat lines. The chat lines are categorized based on the type of alopecia. For example, LPP is an inflammatory scaring alopecia so if you want to chat with someone that has LPP then you would click on the discussion forum, click on inflammatory and then LPP. There are many posts about experiences and treatment for LPP. Please don't get frustrated when you read the posts since a majority of them are not very positive. What doesn't work for others doesn't mean it will not work for you. Also, most people that post on sites are those that are going thru a tough time. That's why it's important for all of us that sign up on these sites to also post the positive experiences to give hope to others suffering from hairloss.
    I find that thinking of my hair loss problem just makes the condition more angry. I also find that not eating healthy and getting enough rest causes it to become angry or even triggers it when it may be in remission. Reducing stress is the main key.
    It sounds like your LPP is the frontal type? There is someone by the name of Glenda from Atlanta who is also a member of this site and also has frontal LPP. You two may be able to share stories as well.
    There is a foundation called CARF (cicatricial alopecia research foundation) that you may find useful. You can access the site by going to www.carfintl.org. The foundation has recently discovered that either there are not enough lipids for hair growth or else too much lipids are toxic. They feel that drugs used to treat type II diabetes can be used to treat LPP and possibly other scarring alopecias. I know of two people that are taking Actos (type II diabetes med) for their LPP; however, I have not heard of their status. I'll post it here once I do find out.
    I have been on plaquenil for 2 months and also prednisone for 5 weeks and am in my last week of prednisone. It takes at least 2 months to see any effect of the plaquenil so that's why I was on prednisone. The prednisone just kept me in place while waiting for the plaquenil to start working. There is about a 60% success rate with plaquenil. Plaquenil is not as harmful as the other drugs used to treat LPP. Also, actos is not as harmful as other drugs used to treat LPP. The other drugs used are cel-cept, cyclosporine, methotrexate, dapsone, and thalidamide. Plaquenil is also first line of choice since it is the least harmful drug. The only side effect I have with plaquenil is it acts like a diet drug and destroys my appetite.
    I don't use any dyes or perm products because my scalp doesn't need anything else to irritate it.
    Hair loss has caused me a great deal of mixed emotions, along with many other people suffering from hair loss. Hair is a part of my identity but so is my personality which is skin deep unlike hair. If I ever get to the point where I do not have enough hair to cover my scalp then I'll get a replacement piece. They are wonderful and can be blended in with your own hair which is better than a wig.
    Please keep us posted on how your doing.
  4. Angela

    Angela Moderator

  5. mopy

    mopy New Member

    Hi Angela,
    Thank you for supplying the web link. I have already seen the site and am a member of CARF; however, it's good to let others know about it.
    Do you know of anyone else that may have lichen planopilaris and/or discoid lupus? The reason I ask is because my doctors are still undecided as to what I have. Biopsies show characteristics of both LPP and DLE. I had an immunofluerecent test done on a new site and it was negative for both LPP & DLE. I also had another biopsy done from a different facility and it was negative for LPP and DLE; however, the biopsy was done while I was on prednisone which wipes out all activity to the t-cell (lymphocytes). However, I was not on prednisone when the immunofluerecent test was done. The doctors say it is hard to determine what I have because of my hereditary disease being similar in site but not on a biopsy to LPP and DLE. I was hoping to communicate with someone who has either LPP or DLE so they can share their symptoms with me. I don't have the excessive hair loss like most say they do with LPP. I also do not have itching; however, I do have burning which is only when I have large bumps. The doctors think the large bumps are due to infection from my hereditary disease but are uncertain. It hurts to be told that I have scaring alopecia but is not firm. I would like an answer so I can move forward rather than always wonder if/when I will be losing my hair. This site is wonderful because it doesn't make me feel alone. Thank you, Angela.
  6. Angela

    Angela Moderator

    I actually never had a biopsy done. After my head was shaved they were able to see the characteristic signs of psuedopelade, which also have some characteristics of LPP. I do get some inflammation, but it wouldn't be enough for a doctor to do a biopsy with.

    Did they do the biopsy on an active inflammation or was it after the fact? From my understanding, the biopsy would be useless without activity.

    It is difficult when its scarring alopecia because we know that hair will never grow back. I always hoped that they were wrong and that I was misdiagnosed, but coming to accept that this is the way it is going to be for me has helped me move forward.

    I wonder if Dr. Vera Price could help you. Have you contacted her at all?
  7. mopy

    mopy New Member

    They did a biopsy on an area that was over a year old, that was burned out. However, they did a biopsy on a new inflamed area but it was sent to Rochester Mayo for the immunofluorescence test and it was negative. They said the immunofluorescence test is not always accurate and that a biopsy is more accurate. Well, in my case the biopsy is not accurate since it was done on an old burned out area. I attempted to make an appointment with Dr Price but they wouldn't take me unless I had a referral from Mayo. So, I went to see Dr Grimes in LA, who is also on the CARF board. Her biopsy was from a new area and it was negative but Mayo said it's because the biopsy was done when I was on prednisone. Prednisone wipes out any activity of the t-cell (lymphocytes). Dr Grimes wasn't sure what I had and was hoping the biopsy would give an answer but in my case it came back showing only my hereditary disease. My hereditary disease can also cause cicatricial alopecia but it is secondary and not primary. It is due to long standing infection/inflammation. I never had scalp problems until I was on Enbrel. Thanks to Enbrel for all this. Scaring hair loss is hard to accept because it's final. I noticed a while back you posted a picture with your hair growing back. You had a full head of hair. Have you lost your hair since then? At least you look good bald unlike me.
  8. Angela

    Angela Moderator

    I couldn't wait any longer to shave it. I know that more would have fallen out (and it has) so it was good that I did it early. Usually I wait till I can't stand looking at myself anymore, but since I love being bald now, it was a good excuse to just take it all off. I had hoped my loss would stay away, but it didn't. I also have to have my husband check to see if any new spots of the scarring type have developed. I haven't had him do that. He just noticed the larger ones (non-scarring type).

    I hope that you get the answers you need.
  9. arts

    arts New Member

    Reading about hairloss and especially cicatricial alopecia leads me to believe that an exact diagnosis is hard to make as the similarities are so vast and also one person may have more than one form of the condition and even scarring and non scarring as in Angela's case.
    In my short journey so far I have been questioning whether my diagnosis is correct and conclusive. Unfortunately this has been counter- productive as it has only produced turmoil within me and hence switched my symptoms on more!
    Mopy as far as my symptoms go, I do not have any bumps but I am noticing a few random spots with a bit of redness, inflammation, around it. These are not always connected with the bare areas so I am thinking maybe I may have some more bald patches to look forward to:(
    I do get burning sensations but these are not full scalp and sometimes they go down my nape and ears! They occur in all different areas including where I apply topical steroids.
    One other thing I have noticed are little acne type spots, that are definitely not acne, down the sides of my neck and the odd one on my face so I hope that I am not going to get lichen planus all over! Best not to think too hard about that right now. I have my dermo appointment in october and will bring it up then!
    Mopy, this is very exasperating and I can feel your pain.
    Please take care and don't let the condition stress you.
    Angela, seeing your photo and your shaved head is an inspiration!
    You look so confident and at ease with life. Thankyou!
    Regards Arts
  10. Pinkskater

    Pinkskater New Member

    Lpp

    Hi, I am new to this forum and this is my first post. I was diagnosed with LPP about 2 months ago. I was having difuse hair loss for over 2 years, with some itching and tender spots on my head. It started after I contracted a virus. It has been a long journey, but at least I know what I am dealing with.

    I am not on any medications, but that is my personal choice. I have alot of sensitivities to drugs, so the side affects outweigh taking the drugs. I have tried homeopathic treatments, but nothing has really worked.

    I will say that for me, I do notice that stress and eating more sugar does trigger increased shedding, itching and tender spots.

    I try very hard not to let this run my life, it is very hard to deal with, but it is not going kill me, it is not terminal.

    I just wanted to add that after 6 months of watching my hair get more gray and having two toned hair, I went and had my hair colored :) I told the stylist about my scalp condition and she put all the color on without even touching my scalp and I had no problems! She was very nice and understanding. So, I think that may be an option for some :D

    There is alot of information that is hard to read and well, maybe, negative, but I try to stay positive, because it could be so much worse. I can always buy a beautiful hair piece, but if it was cancer or something else, the cure would not be as simple. So, that is why I remind myself.

    I used to have beautiful thick hair that I got alot of compliments on, but not anymore. It has been hard on my self esteem, but it has also made me stronger on the inside and made me put what is really important in persepective.

    I am very sorry for anyone that has LPP, it is hard but I am thankful I found this board and others too.
  11. Angela

    Angela Moderator

    With hair loss, a diagnosis can be elusive and it can leave us feeling fearful. Some women never get a diagnoses, are completely healthy and yet so much hair is falling out. It baffles the mind! :eek: For myself, I went through a few years of doubting what I was diagnosed with, and I have been tempted to try and get another diagnosis, but in the end I only know of one thing that is profoundly true...there is no cure for hair loss. As I accepted that this truth is stinging and hard, I needed to find ways to move foreword and feel good about myself regardless of my hair loss.
    My scalp isn't soft and supple, it feels leathery and is tight like I'm wearing a really small hat and even to touch my scalp feels like I'm not touching my own head. I know this is due to the atrophy I have experienced, and unlike non-scarring alopecia which doesn't cause the scalp skin to atrophy, I have that as a constant reminder that the diagnosis was the correct one. As my scarring alopecia takes more hair, the likely hood of me being able to grow back the healthy hair that is left, grows slim. I know that now.
    We can't control when it falls out, but we can control what we do about it. We can allow ourselves the permission to be happy and free despite our hair.
  12. mopy

    mopy New Member

    Angela,I admire you. You are very strong and are a great mentor to people like myself. I do not have the courage to shave my head; however, I have thought about it. My husband tells me not to shave my head because the hair may grow back in the thining areas. Either he is having a hard time accepting what I have or else is more hopeful than I am. I think the doctors saying they do not know what I have gives my husband a little hope that I may not have scarring alopecia. I want to be hopeful but after getting discoid lupus last year from drug induced lupus due to Enbrel, I have lost my hope. It's hard to believe the doctors can confirm I had DLE in one area but now can not confirm what I have in new areas. I guess it's hard for them since I don't have all the symptoms. I don't have the excessive hairloss like others. In fact, when the inflammation and lessions started I only lost 100-120 hair a day for about 1-2 weeks at the most. The hairloss was only in the inflamed and lession areas. I guess 100-120 strands is normal daily hairloss. I now lose about 15-25 hair a day, at the most. I have talked to someone about a hair replacement piece but my husband insists I wait to see what happens when all calms down. If the inflammation and lessions are from my hereditary disease then there will be no scarring unless the inflammation and lessions are long progressing and the antibiotics and antiviral meds do not help. Part of me wants to get the hair replacement piece so I can move on and not think about what's going on. At least I'm doing better now than I was 2 months ago when I was told what I might have. I cried every day for weeks but now I at least have accepted the worse and have looked at options. I guess that's the first part of moving forward. Angela, thank you so much for sharing your stories. You are an inspiration!
  13. Angela

    Angela Moderator

    Thank you so much for your kind words. I really appreciate it. I believe we each need to do what we feel is important to move forward. They make hair pieces in all different sizes and shapes. If it will help you feel more confident, look into your options. I don't know your husband, but, he could have a misconception as to what the hair piece would look like. You could ask him to support your decision to at least go and look at some pieces together at a wig salon. I took my husband to the wig salon and we had a blast. LOL I made him wear some of the wigs! :D
    They make some toppers so beautiful and blend so well that others would never in a million years know it was a hair piece. He could also be thinking of those old dead rat look alike toupees that men used to use way back when.
    It is at least helpful while you wait and see if it will grow back. If it is DLE, that particular area may never grow hair back.

    Shaving is a very personal decision. It felt better for me to shave it all off, but it took a long time for me to actually love myself bald and to accept my own beauty.
    I also knew that if I did get regrowth in the areas of healthy hair, that with my hair being a longer length, the shorter new hairs would never catch up.

    I'm really happy to hear that you have a supportive husband. Men do want to be able to "fix" the problem, and sometimes the way they can help fix it, is to support our decisions concerning what we feel is best for our hair. Whether it is getting a topper or wig, or even shaving it off. I let my husband shave my head because he loves to help me feel better about myself. It is a truly intimate and beautiful thing. :>
  14. arts

    arts New Member

    Hi Everyone!

    Pinkskater I was thrilled to read your post.
    You have addressed many of my concerns.

    I am at the stage where my greys, which are many, are showing big time and like you say I am two tone. This is definitely not a good look.
    However, in the past when I have dyed my hair or used products like mousse or gel my scalp has reacted with spots. This makes me reluctant to use dye as my husband feels that may be this is the cause of the lpp! Anyway my scalp is more reactive at the moment so it may not be a good time to aggravate it further. my hair stylist suggested foils so that my hair does not look grey and then suddenly dark brown! Also then my whole head is not subjected to colour. It sounds like a good transition.
    At present I have changed shampoo from Pantene to head and shoulders and am using a topical steroid. Since this change my scalp is feeling more irritated and has numerous little spots/bumps which hurt when I brush my hair. Maybe I need to go back to pantene!
    The steroid which I have been asked to apply to the front part of my scalp and eyebrows, which is where i have the lpp, is changing the texture of my skin. It is drying it out , thinning it out and darkening the skin. Talk about ageing fast!!!! I feel like I do not want to use it anymore.
    The spots are small and in all different areas of my scalp and I am worried that this may indicate new areas of hair loss. In the past where hair loss has occurred I do not remember getting these spots, but then I did not think I had a problem so was not paying attention!!!

    Angela, how much hair loss did you have before you decided to shave your head. For now I am able to cover my bare scalp easily. Infact no one can tell that I have a problem. If anything they will comment on my undyed hair!!!! and awful skin texture ( due to the steroid )!!!!:(
  15. Angela

    Angela Moderator

    [​IMG]

    This is what my hair looked like as it was growing in. If you notice you'll see all the irregular circles. Some look oblong because they were two or even three little spots the size of an eraser head and then they converged as more hair was lost. Since I also have AA, that would always make my hair look even worse. This past spring was the first time since I started losing my hair that I had so much grow back in. All those little spots are permanent hair loss. I felt that I could still cover those areas with DermMatch and get away with it, however, a few big patches were found (AA) and I knew that it wouldn't be long before I would need to shave it off. I do still have to post my two videos (me showing my spots pre-shave and also being shaved) and when I do, I'll post a link here so that you can see the videos.
  16. arts

    arts New Member

    Hi Angela
    I am sure you have posted a pic but I cannot seem to find it!:confused:
    Can you please post it again?
    Thanks very much. Arts
  17. arts

    arts New Member

    Ok Angela! I just logged on again and the pic is here for me to see.
    Thanks! Not sure where it went before!
    Arts
  18. arts

    arts New Member

    topical steroid side effects

    I am coming to the conclusion that the skin on my scalp is reactive ie spotty itchy burning as an effect of the topical steroid.
    Before its use I do not remember any of these problems except maybe a few spots occasionally and some slight itching!
    This is causing me way too much grief.
    Anyone else experienced side effects with topical steroids??:mad:
  19. mopy

    mopy New Member

    Lpp

    Arts, I tried DHS with zinc shampoo which is the same as Head and Shoulders. It actually made my entire scalp red and burned like it was on fire. The ingredients were too strong for my scalp. I think it is what started the bumps. The day my scalp was on fire was the day I realized it was due to the shampoo so I stopped using it and about 2 weeks later the redness went away and so did the bumps. I also rinsed my head and then applied "cold" wet towels to it. It reduced the redness by quite a bit, plus it added moisture back to the scalp. It's hard to tell what is scarring alopecia and my hereditary disease since they look very similar. I have found that topical clobetizole irritates and worsens my sclap so I now use Olux-E foam and Clobex spray. Olux-E foam is clobetizole but it has emolient in it so it doesn't dry out the scalp or make it burn as much when applied. The Clobex spray is not as irritating as the generic clobetizole sollution. I use clobetizol ointment and it doesn't burn or irritate my scalp. The only thing that burns or irritates it is the generic clobetisol sollution. Have you tried Protopic or Elidel. Both are like topical Cyclosporine. Some people have luck with it. It is not a steroid so that's a big plus. I use it and it seems to work if I apply it 2x a day and don't miss any days. Angela is very knowledgeable so hopefully she will be able to give you some pointers. Take care, and good luck!
  20. mopy

    mopy New Member

    Hi Angela,
    Your hair looks great. I can hardly notice the pencil eraser spots. In fact, it was hard to locate them. I am thinking of using DermMatch. Does it take long to apply it? Also, do you have to use another product with it? Also, what happens when you get it wet? Is it worth investing in or would I be better off getting a replacement piece that covers only the thin area in the back of my head?