Alopecia

[Maritimergal]

Hello, I'm new to the forum.. not sure if I am using it right but here goes... I've recently been diagonised with Lichen Planuspolairis , I was wondering if anyone else on this forum has it and what kind of treatment they are using .. I can not seem to get any information...
Any help would be greatly appreciated .
Thanks,
Maritimergal

[mcg]

Hi, I am new to the forum too. I have LPP and was diagnosed last winter after a biopsy. I have "shots" in my scalp once/month from my dermatologist and I apply a solution to my scalp two times a day. The hair loss has slowed, but I am not sure what can be attributed to the treatments and what can be attributed to time and the loss burning out. Where is your hair loss? When did it start? Some of my loss can be hidden -- it's mostly behind my ears/back of head, but can be covered by other hair over it. The rest of the loss is on top of my head, which can be challenging. I was told that the activity can last for about 1.5 years, give or take. I am at that now, but I am sure it's an individual thing. Has your doctor given you more information about LPP?

[Maritimergal]

Hi, Thanks so much for responding to my post.... I'm sure if your anything like me.. this process has been frightening.. I am a 51 yr old female... And was diagonised 6 weeks ago... Through a biospy of my sclap. I am taking 2 different kinds of medication ( Cyclosporine and Metronidazole)( oral medications)
Most of my hair loss at present is in the front.. and on the sides... Not sure how long I've had it .. as I thought I had psoriasis on the scalp and the GP had given me a lotion which I used 3 or 4 times a year.. for several years now...I would say it has been the last two years since I noticed more and more hair loss , and really thought it might have been menopause.. I asked my doctor to send me to a DERM.. thus the term Lichen Planuspoliaris.. Unfortunatly around this area ,I can not find a doctor that knows to much about it.... I've been trying for weeks to get come information.. And I was really hoping to find someone who has been through it... and be able to draw some comfort from one another and someone who understands what you might being going throuh...
I've also lost most of my eyebrows.. and the hair off my legs and arms....
I live in New Brunswick Canada, and even on the internet I find limited informatiom.. I guess this is frightening to me... as I'm not sure were to turn.. I go back and see the Derm Nov 16-2007.. She asked me to try this medication for 4 months...
Have you found anyone else on this sight that has this condition.....
I was on another site called Cell Forum... over 12 thousand memebers.. and not one with this condition..
Do you feel you've been helped .. or are there still alot of unanswered questions for you as well..
Did you try oral medication prior or so far just the injections...
My Derm left me to feel this is a permitted problem and I will have to take the medication for the rest of ny life... though it could go into remission.. ( anything on this for YOU )
Once again thank you so much for your reponse... hope things are coming along for you.. look forward to hearing from you.
Maritimergal

[mcg]

This is for Maritimergal... I do feel as though I am being helped, but it is frustrating b/c to fully feel like I am being helped my hair loss would stop and my hair would come back. It does appear after 1.5 years of it that it is burning out. Initially I would have 30 to 40 shots in my scalp in one appt, now it's more like 10 shots. I am not sure I am on the same medication as you. I put a solution ("clobetasol propionate") on my scalp -- nothing in pill form. These injections are a higher-test steriod, from what I understand. There are other remedies too that are more intensive, but I opted not to go that route, so I am not familiar with them. Not sure how to steer you to an expert on LPP in your area. Perhaps your dermotologist can refer you to a doc in another city? I am just talking to my doctor now about what we can do once it burns out. A next step may include cutting away scalp where the loss is and moving the scalp on either side together over that area. Initially for me too, my derm did not know what it was, and I ignored it, so after 6 months of living with it I was finally tested. Precious time was lost there, and I regret that.

[Maritimergal]

Hi again...
I get from my Derm.. that there is not alot of information .. I guess the hard part is , as the Derm put it.. they don not know what causes it and there is no cure for it...
My GP said he'd give me a referral.. but he doesn't know who to send me too.....or where..
that is what I find frustrating.. no one seems to know anything..
Are you in Canada or the States.. and is the doctor that is looking after you... familiar with this condition.. have they treated it before... Someone told me to try and get a Doctor that has treated this before and has patients that have had it for a long time.. To get a better understanding of what they went through and what helped.
What I got from my Derm.. is what is gone is gone.. it will not grow back...( hair that is)
And I am concerned about the long term effects of this medication.. At this point I believe I can live with the hair loss .. but I wonder what else it is doing to me.... Do not know the cause and there is no cure.... is what scares me.....
Is this the information you are getting... And what do they mean it will burn out after 1.5 years.... all they've said to me is it has been known to go into remission... key words HAS BEEN KNOWN...
Hopefully there is help out there for us...
Take Care Talk to you soon
Maritimergal

[mcg]

I am in the States. We have one person in my state Of Massachusetts (not 100% sure/so I am told) who has treated others with LPP. I saw an email echange on line with doctors from South Carolina, Univ of British Columbia and Ontario talking about it. I was told that there is no conclusive evidence of what causes it, but stress could be a factor/play a role. I had a very high level of stress when this all started. I know that others have expereinced that too, but again, just a thought. My mother actually has it too, but my doctor thought that was curious/interesting info, not an "a-ha!" I asked of my continued use of these steriods would affect my body in general and I was told no. I was told that the hair loss is premanent. I was told on average that it runs its course for a year to a year and a half, but this is an average of others, and has nothing to do with me personally. I hope that you can find an expert on this.

[Maritimergal]

You say your Mom had it ..... Wow.. what direction did that go... did it stop with or without medication... And how is she doing with it now.. I ask that because.. I was wondering if she had hair loss anywhere else besides her head.. and have you? as I 've said I've lost most of my eyebrows,, the hair on my arms and legs on my ears in my nose... Not sure what that is about... You say it burns out.. I still don't get that.. I got the impression without trying sometime of the medication that might work.. I will go complete bald.. Is that the same information you were given....
The Medication I'm taking is a drug that is given to transplant patients to help prevent organ rejection...
These injections.... would you mine sharing the name.. ( thanks)
Have you connected with anyone else with this condition on this site...
And have they had any success....
So do you see a change in your hair loss...?.....
Your doctor are you his first patient..
I know with my derm she said there's another lady around my age who's taking the medication and right now is in remission,... another lady a little older then me.. will not take the medication due the side effects.. an another 80 year old has opted to wear a wig....
which is what I'm thinking if this medication will cause more problems thenm losing my hair... Don't get me wrong I'm devesated about my hair... But This mediacation can cause cancer,, and I wouldn't want that either....
So there are some tuff decisions peolpe are left with.. for something they know so little about..
Thanks for taking the time to write.. and for sharing whta information you have..
Look forward to hearing from you.. and hopefully learning more about this terrible condition
Warmest Regards,
Maritimergal

[mcg]

Hi, some answers for you: My mother's hair loss if confined to one small spot. Probably about the size of a quarter on the back of her head. (I have two big-ish patches, and numberous small spots all over). She occasionally uses the clobetasol propionate (an alcohol-like solution), but uses it less and less now b/c she's experienced no more loss. I was told that the condition burns out on its own -- that losing all your hair is not the case for all people. For some I understand that if it is not caught early enough, that total loss can happen. I do not have any hair loss anywhere else on my body. I do not know the name of the stuff that gets injected into my scalp. I get my next injections third week of october and can tell you at that time what the name of the medication is. I have seen other people on this site talk about scaly scalp and hair loss, and I think there are some posts under "alopecias" but I have not seen anyone talk specifically about LPP (maybe they are just not diagnosed yet). I am not my doctor's first patient for this condition, she definately treats others in my area. I know of two women in my town that have it (tho not personally). I hope this info helps. --mcg.

[dutchie6]

hi
my son after 2 biopsy and 4 yrs later was finally diagnosed with lichen planopiliaris.
he is being treated with olux-a steriod foam on affected areas for 3 months, then they want to take more aggressive action after that. the LP is taking on a life of it's own right now and as a mother -my heart is breaking! i am not sure there will be anything left when we go back in 2 months. i hope i helped. another option our dr mentioned was straight steriod injections into the scalp. the main thing is to stop the inflammation which is what is causing the the follicle damage = hair loss.

[emmaray]

Thanks so much for your response.. hope things get better for your son... I know it is very difficult to deal with... I was diagonised approx 5 moths ago.. the journey is long... I am a 51 year old female.. I guess what strikes me the hardest is there such little informatiom on this condition..Once again thanks for your response.. let me know if something works...... It would be nice to find some people that have gone through it and get their feed back on it..
Warnest Regards
Maritimer