My experience

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Hi, I'm a 17 year old girl from the middle east. I have been diagnosed early this year with pretty mild lichen planus on my feet, wrists, stomach and thighs. My dermatologist didn't tell me to take any medications since he said it wasn't a serious disease and I didn't have any symptoms like itching or pain. I'm just wondering what could be the cause of it?

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  • Posted

    I've been asking the same question. Can't get a answer. But I also have it in my mouth which is painful.

    If you ever find out let me know.

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    • Posted

      A specialist dentist told me it is definitely an autoimmune disease and you have it for life!  May have flares and remissions or it might be continuous.  YUK!   Just saw a Dermatologis and he disagrees that it is autoimmune, but ir is an immune disorder.  Both specialists tend to dismiss it as a minor problem for some reason.  The steroid mouthwash helps but for me it has not gotten rid of it at all.  The Derm. has ordered a steroid puffer which you do not inhale, just keep in your mouth and then rinse with water.  I'll try this as soon as the mouthwash it finished.  I have noticed that keeping really well hydrated seems to help...  maybe just appears less white-ish, not sure.  I feel there must be a link to some other condition or at least some reason why some people develop this but seems like we are pretty much dismissed by the medical profession.  It is not all that uncommon I gather but not common enough for big pharma to go into research and devlopment and get some drugs which might be helpful. (not a big enough market)  Antihistamines also help some it seems but tend to dry out the mouth which is not desired...  It might just be up to all of us to come up with some possibilities?  Tough problem, hard to combat without Dr.s being very supportive.  They all say diet makes no difference, but worth investigating I suppose.  Probably no sweets makes sense?  I wonder if anyone has tried large doses of Vitamin C or ????   hmmm    I'll keep checking on here for new ideas. (Both specialists say the sun helps some, makes others worse!)

       

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  • Posted

    Lichen Planus (LP) and Oral Lichen Planus (OLP)  - It's an autoimmune disease.  To my knowledge, the cause is still unknown.  I've had several autoimmune issues over the years, the latest being LP/OLP, which I got in 2011.   Your immune system is overactive and attacking your body.  I am so sorry for you and chris50240 and everyone who has this disease.  You are fortunate yours doesn't itch.  I don't have much of it on my skin, but it itches.  I have it in my mouth and have learned not to eat anything spicy or of a hot temperature.  Fruit sets it off, I guess from the acid, but I cheat and eat it anyway sometimes.  Right now I take Mycophenolate, and immune suppressant.  It has made my life much better.  I still have issues but they are minor compared to sores in my mouth and vulva all the time.  I am approaching my doctor on Monday to try a new medication-Low Dose Nalprexone.  I live in the US and it has to be made in a compound pharmacy.  I've located one who does this and makes it available in 4.5mg, which is the standard dose.  The pharmacist said he has several patients with LP/OLP on it and they are having great success.  I want to switch to Nalprexone for two reasons.  I've heard people are having really good success with it and your body responds as if your immune system is being reset (and I'm hoping it'll help another immune issue I have), and two because it is cheaper than what I take now.  I am 64, and I am so sorry you are so young with this illness.  I am surprised your dr. didn't give you some topical medication for it even if it isn't itching.  If it gets worse, go back to your doctor.  Do some additional research online, too, and learn as much as you can so you will be informed when talking with your doctor.  Good luck and stay positive! Hugs.

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    • Posted

      It's starting to fade away without using anything on my skin to a brown color, I'm just hoping it doesn't get worse. 

      Thanks, I'm just trying to ignore it and not stress about it as best as I can for now.

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