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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 | Dec 16, 2025
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 | Dec 18, 2025
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 | Dec 18, 2025

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

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bestoflife | @bestoflife | Dec 18, 2025

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 | Dec 19, 2025

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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laurie64 | @laurie64 | Dec 20, 2025
In reply to @mjq "OLP is an autoimmune disease. It is not "curable" only manageable in some cases. I don't..." + (show)
Profile picture for mjq @mjq

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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@mjq . I went off it for two weeks and mouth sores came back. It does work. In theory valve and diflucan should not work, but it does
I spoke with another person who also had success with this treatment
I guess with these rare autoimmune disorders you have to be open minded.

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mayo99824 | @mayo99824 | Dec 21, 2025

I don’t want to birdwalk, but I just started a thread on lichen planus brought on by betablockers/ACE inhibitors. Any chance you are on any of these meds? I am trying to gather info.
Thanks

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microgirl | @microgirl | Dec 21, 2025
In reply to @elizabethbryant "Yes, I have had this lichen planus since 2013, the way you handle stress has a..." + (show)
Profile picture for Liz1 @elizabethbryant

Yes, I have had this lichen planus since 2013, the way you handle stress has a large part in starting this condition and I believe it starts in the stomach at least mine did. I started using the anti yeast prescription pills and that helps. Vitamin 12 1,000 mg and liquid Vitamin B's help also.
Vitamin D 3 is important your doctor can give you Vitamin D in 50,000 units by prescription and then fall back to Vitamin D-3 Swanson.
My lichen planus is located under one side of my tongue and is raw. I found something that cools it down immediately "Dale Audrey
Cool Mint Ayurvedic Oral Pulling Rinse." I carry some in the small bottle in my purse.
Toothpaste would be "Biotene" Don't eat any processed foods. Only organic foods and NO sugar. only Truvia.
I will see a doctor in MD on Wed. so I will post end of week how that goes. I did not know that I also had a parotid salvia tumor
it was discovered in an unrelated scan from the errosive lichen planus that turned into cancer.
Erosive lichen planus should be checked every 3 months. It can turn to cancer quickly. Mine was stage 1.
I am working on the stress reduction with whatever it takes after the awful tongue cancer surgery.

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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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glongdmd | @glongdmd | Dec 22, 2025
In reply to @laurie64 "Valacyclovir 500mg a day and diflucan 100 mg a day. Hope this helps 🙏" + (show)
Profile picture for laurie64 @laurie64

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

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@laurie64 Thank you!

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