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Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

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bestoflife | @bestoflife | 23 hours ago
In reply to @microgirl "@elizabethbryant I have been treated for lichen planus for about 4 years-biopsies showed erosive in some..." + (show)
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@elizabethbryant
I have been treated for lichen planus for about 4 years-biopsies showed erosive in some spots. I see my specialist in Cincinnati once per year. I really feel as though I don’t know what I am doing most of the time! My dentist just told me I should be having my teeth cleaned every 3 months because of the lp. I often have “sloughing off” of the inner cheeks but seldom have discomfort. Did you have spots in your mouth that alerted you to the possibility of cancer or was this a surprise?
I also have vaginal lp which seems even more confusing to me as I am often red “down there “ 🤷‍♀️

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I always check into this group to see what's new and find that most of the time I find very helpful information. What I would like to find out what your OLP looks like. Mine never goes away. I pull back my lips, and those glaring red gums are looking back at me, nothing like they used to be. My cheeks have many white lesions and must be slightly swelled as I have frequently bitten them in my sleep. Also what areas on the gums that almost look like bone coming through. I am wondering if an others mouth is similar?

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zinnia55 | @zinnia55 | 10 hours ago
In reply to @bestoflife "I don't have a suggestion, but I have been living with this disease for aa year..." + (show)
Profile picture for bestoflife @bestoflife

I don't have a suggestion, but I have been living with this disease for aa year or so. No one wants to give it a name, including the oral surgeon who biopsied me twice...., but I have spent enough time researching this to know exactly what it is. Please someone, let me know how this forms in your mouths and how it feels...and has anyone lost teeth or had serious other side effects. I am 82 yo, and would love to have my years remaining, a little less distressing. Hope each and everyone of you find relief and peace. Thank you.

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@bestoflife Hi, I was told you will not lose your teeth because that is a bone structure and this effects the soft tissue. I have no idea how it forms or how it got triggered for me. My gums were pretty erosive looking but they did not hurt too bad mostly uncomfortable there was a lot of redness and the white strie and twice I had a little bleeding. I would suggest going to a dermatologist that is the only doctor I have found relief with. My oral surgeon biopsied it but then basically said I am on my own he doesnt treat it. For me the worse part is never knowing what it was or how to make it stop or what food to eat my brain just spiraled. Now that I have found some treatment and it has calmed down it is becoming easier to deal with.

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