Lichen Planopilaris

• Lichen Planopilaris by VX9 on 23 Sep, 2013 03:53
• Hello,
  
  I have had sebhorric dermatitis for many years and recently was diagnosed with lichen planopilaris. I have several areas of permanent scarring and have been considering shaving but have had the following reservations:
  
  1) Will the dermatitis make my scalp look awful, will I need to treat with steroid creams to make it go away, or is there a possibility that shaving will actually help it just clear up for the first time in my life? If it does help clear up the dermatitis, how long will this take and what's the best way to handle the period where it is clearing?
  
  2) I still have active flaring of the lichen planopilaris - redness in patches, etc. - will my scalp look awful with those patches or is there any chance that shaving might make them easier to treat short term or help them clear?
  
  3) Shadow - I have darker hair, how dramatic will the shadow effect be? Should I shave down completely (concerns above) or try to go with a buzz that will clearly show where I have the permanent scarring (that might hide some of the redness/dermatitis for now)? Will the shadow effect ever go away or should I just plan on always having it?
  
  4) If I do shave fully, how much time can I expect to be spending shaving on a weekly basis - how much time will it add to my mornings when I need to and how often do I need to do the maintenance?
  
  
  It has been difficult to continue forward with putting steroid ointments on my head every day when I read about lichen planopilaris and from what I can tell it looks like it is typically a losing battle. Most of the time I feel like I ought to just shave and get it over with so I can move on and stop the nuisance and potential side effects of treatment - but I have been unable to find a good dermatologist to talk to, each I have consulted with so far doesn't seem comfortable having any real conversation with me about long term odds or going bald - just writing scrips.
  
  
  I was overjoyed to find the sly community and wanted to reach out to folks here and see if anyone has had similar experiences or has any advice. If any portion of this should be split off and moved to another section of the forum I'm more than happy to do so as well.
  
  
  Thanks in advance,
  
  -VX9
• #1 by Mikekoz13 on 23 Sep, 2013 05:46
• VX... Welcome to the Forum.
  
  Dark hair shadow... not a problem for most. Use good products and and shave with and then against the grain and shadow will be minimal.
  
  We have a member here that also had SD. Since he shaved his head, no problem. Shaving will actually make it go away. I don't know about the lichen.
  
  As for shaving time... that varies. I can shave my head and face in about 5 minutes. Your time will probably be longer at first but in time will shorten.
• #2 by MarshalArtist on 23 Sep, 2013 05:53
• I just checked several sources including Mayo Clinic, NIH, NIAAD all of which say to shave your facial hair to avoid SD flair-ups. The same would apply to your scalp, but aesthetically people are often hesitant to do so.
  A colleague of mine with SD shaves his head and says it helps him exfoliate his scalp and apply meds as needed.  He also says exposure to sunlight relieves his symptoms.  He would recommend not "Bic-ing it" (his term) until you are symptom free but just clip it as close as you are comfortable.
  Depending on how extensive the scars are, they can be minimized over time.  Some people here know some good products and homemade remedies to try.  Selsun Blue shampoo is good to treat the flakes and itching--even if you are bald and otherwise do not need shampoo.
  This is all anecdotal since I cannot see you to know your symptoms and severity.  My friend says go for it because it has helped him. The question to ask yourself should be, "Can it get worse than it already is?"  Once you know that, the decision becomes yours.  As some here can attest, taking charge of the situation can be healing in and of itself. Whatever your decision, we support you.
• #3 by 50plus on 29 Sep, 2013 02:35
• Hi VX9. I have Lich P...
  
  I'm not medicating you here just telling you what I've been prescribed by a fantastic dermatologist here in Sydney (RPA Hospitals' clinic)
  
  Prednisone - 50mg first week then 25mg (1x tab) after that for a total of 6 weeks.
  Novasone lotion applied twice a day.
  Caltrate plus as Prednisone can play with bone strength.
  
  Lichen Planopilaris is an auto immune system problem and needs to be turned off from within. It's important to do so as those who have this rare condition are otherwise open to other auto immune problems down the track.
  
  Be very careful with shaving with a blade - very very careful. Your scalp is sensitive and vulnerable right now.
  
  It's not surprising you are having a hit miss with your treatment as it is very rare.
  
  Shaving will have no positive effect on the condition and you already know the scarring hair loss is permanent.
  
  After several weeks on the above medication (which is monitored every two weeks) I'm experiencing a lot less redness and can shave with a blade confidently.
  
  All the very best with it all AND PLEASE KEEP IN TOUCH.
  
• #4 by VX9 on 02 Oct, 2013 02:34
• Thanks so much for the responses and thoughts.
  
  
  50plus, got a chance to read through all your threads. It is great to be able to connect with someone who has dealt with LPP.
  
  From your posts it looks like you went with a buzz and then after consulting with a specialist started on the treatment course you mentioned above, and that after a few weeks were able to move comfortably from a buzz to full shave.
  
  I was figuring that was about the route I would need to follow as I was also nervous about shaving while I have active flares/irritation from the LPP.
  
  My next concern though is whether the flares would ever go away and if they would interfere with my ability to maintain a full shave. My understanding of LPP is that unless it goes into a period of remission it can pretty much always flare up again as long as there are hair follicles to attack.
  
  I'm not sure the concern would really change my course of action as I suspect it is much easier to use topical treatments on any flare ups and that I would still look better and be more comfortable with a shaved (or buzzed) style - but I am curious if you have any thoughts/experiences.
  
  You also mentioned above that "Shaving will have no positive effect on the condition [...]" and while I wasn't hoping for miraculous regrowth in areas of permanent scarring after shaving I was hoping that shaving might reduce the frequency or severity of LPP flare ups as treating with topical steroids seems like a catch 22 - might help with the itching/redness, but it also prolongs how long the hair follicles will be around to potentially keep triggering new flare ups. On the other hand, I may always need to go that route to deal with the SD (though I have noticed that the areas of permanent scarring I have seem to have significantly less to none of the SD symptoms).
  
  
  Thanks again - I feel incredibly lucky to have found such a great forum and community.
• #5 by Sir Harry on 02 Oct, 2013 04:25
• Welcome, VX9! Glad to have you here, also thanks to 50 plus for sharing his experiences. While some dermatologists may just shrug it off and just write prescriptions, it doesn't hurt to shop around. I didn't have SD, but I had boils pop up on my scalp and it took me about five dermatologists before I found one who performed not only successful surgeries, but also gave me oral and topical medications to prevent future boils. I had to make some changes myself, but my point is, if you are not satisfied with the first dermatologist (or any other kind of business for that matter) there is no harm in telling them, or in shopping around and seeing other dermatologists until you get it right. Good luck to you and keep us posted!
• #6 by Baldstu on 03 Oct, 2013 11:35
• Ver interesting never heard of this condition ,
• #7 by 50plus on 03 Oct, 2013 18:57
• Hi again VX9. Very happy to contribute especially as it is a rare condition.
  
  Sir Harry is right in saying shop around. I'ts rare and does throw a number of dermatologists. The look on one particular specialists' face needed to be bottled. He diagnosed me correctly but as to what to do? ?;
  
  That's right..I went slowly from a buzz to a shave. If you go too early into a shave you can get ingrown hairs / infection and the like. Let it settle and live with the patchiness for a while.
  
  As for the flair up going away like I said it needs to be turned off from within. The Prednisone is the key. Sure I'm able to shave now as per anyone else but the FULL treatment in order for no more flair ups does take a lengthy period of time as I understand it. So I'm shaving while still taking the prednisone. after the Prednisone treatment I'm to be put on another - not so radical - drug that one can stay on for a lengthy period without adverse side effects. So as you can see the overall treatment from A - Z is a bit of a long one.
  
  Having said the above once the redness and that had subsided I was well and truly on my way. it would be tempting to go off any treatment at this point but don't because you guessed it ….needs to turned off from within. Like you said it needs to into remission.
  
  You will know yourself as to what effect shaving / buzzing is having on your scalp so I would say go with what you see happening. Shaving doesn't have an effect as far treating the LP though - I will post again ..good luck
  
  oh..I would push for more than a topical treatment as it wasn't until then that I saw real results. Cheers
  
  
  
  
  
   
• #8 by 50plus on 03 Oct, 2013 19:18
• I though that way too in that the shaving might reduce the frequency of LP flair ups HOWEVER the hair follicles are not
  
  triggering new flair ups - It's an auto immune condition. Therefore very short, almost invisible, hair after shaving
  
  close is not reducing the frequency of flair ups. Chat soon.
  
  You'll be fine with it all once you are put on a course of something includes more that a topical treatment. Like i said earlier though I'm not prescribing just telling of my experience and I'm very happy with the results I've had and am having.
  
  I'ts important to also be diligent in taking / applying these treatments. Try not to miss any days.
• #9 by 50plus on 03 Oct, 2013 19:21
• VX9 - I might of missed something in your posts so if there is anything els please ask. Cheers