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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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cgrasse54 | @cgrasse54 | 2 days ago
In reply to @becsbuddy "@cgrasse54 That’s wonderful! Do you get the medicine through his clinic or is it prescribed? I..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@cgrasse54 That’s wonderful! Do you get the medicine through his clinic or is it prescribed? I think many others would like to know!

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@becsbuddy The troche is prescribed through a compounding pharmacy.

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glongdmd | @glongdmd | 1 day ago
In reply to @laurie64 "Hi. I have erosive oral lichen planus and an infectious disease specialist made rounds to my..." + (show)
Profile picture for laurie64 @laurie64

Hi. I have erosive oral lichen planus and an infectious disease specialist made rounds to my hospital stay. He prescribed Valcyclovire and diflucan. I have been in remission for 18 months. My oral pathologist is stumped why this works, but it does for me. Good luck

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@laurie64 What are the dosages for those two drugs?

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laurie64 | @laurie64 | 1 day ago

Valacyclovir 500mg a day and diflucan 100 mg a day. Hope this helps 🙏

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bestoflife | @bestoflife | 20 hours ago

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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mjq | @mjq | 3 hours ago

OLP is an autoimmune disease. It is not "curable" only manageable in some cases. I don't understand why Valacyclovir 500mg a day and diflucan 100 mg would be prescribed except for comfort.

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