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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@lioness

@dreamer60 Lol learnt your lesson thats what it takes I did same aboit sweets ,but with my triglycerides sugar really bumped up the number so now avoiding it as much as possible ,hard, we live and learn ?

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So very true!

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I was just recently diagnosed with oral lichen planus about 1 month ago. It is painful, but not overwhelming. Mostly just looking for other people with this condition to share stories with and hopefully one day share a cure with. I'm 44. So far, I've just been using a gentle toothbrush, Tom's toothpaste, no swishing just gently wash mouth with water and release. I also gently swish (hold, move around, and release not really swish) with Chlorhexidine mouthwash and that seems to help as do gently swishes with saliva substitute packs (Salivamax) overall keeping the oral mucosa clean and moist but not overstimulating the surface with friction. The specialist said it's about 10% erosive and the rest not erosive. For those who it turned in to cancer, was it immediately obvious somehow, or how did you know it had turned? The specialist gave me a steroid cream to use if the pain gets really bad, but I haven't used it yet. As another poster mentioned regarding NSAIDS, I've also used a lot of NSAIDs due to an unrelated condition and was recently tried on Sprix (nasal form of Toradol) and coincidentally (or not) that is when the lichen planus started (right after starting Sprix). So I try to minimize Advil, etc. as much as possible. My uncle had autoimmune diseases; rheumatoid arthritis and lupus and had to take treatment with Methotrexate-not sure if autoimmune disease would be genetically passed on (or a predisposition for). Happy New Year to all and look forward to hearing from everyone.

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Hello @cheryl5778, welcome to Mayo Clinic Connect. Thank you for sharing what helps you treat oral lichen planus and thank you for joining this community. I’m tagging @jshdma @cmtg @skaryna @riverqueen1305, and @alpaca, as they may also be able to share more insights about their experiences with LP.

Here is some information from Mayo Clinic about oral LP: https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869

I also found another article that may be helpful.

The effects of photodynamic and low-level laser therapy for treatment of oral lichen planus—A systematic review and meta-analysis
https://www.sciencedirect.com/science/article/abs/pii/S1572100018301613

Are you able to share a little more about how you were diagnosed?

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@cheryl5778

I was just recently diagnosed with oral lichen planus about 1 month ago. It is painful, but not overwhelming. Mostly just looking for other people with this condition to share stories with and hopefully one day share a cure with. I'm 44. So far, I've just been using a gentle toothbrush, Tom's toothpaste, no swishing just gently wash mouth with water and release. I also gently swish (hold, move around, and release not really swish) with Chlorhexidine mouthwash and that seems to help as do gently swishes with saliva substitute packs (Salivamax) overall keeping the oral mucosa clean and moist but not overstimulating the surface with friction. The specialist said it's about 10% erosive and the rest not erosive. For those who it turned in to cancer, was it immediately obvious somehow, or how did you know it had turned? The specialist gave me a steroid cream to use if the pain gets really bad, but I haven't used it yet. As another poster mentioned regarding NSAIDS, I've also used a lot of NSAIDs due to an unrelated condition and was recently tried on Sprix (nasal form of Toradol) and coincidentally (or not) that is when the lichen planus started (right after starting Sprix). So I try to minimize Advil, etc. as much as possible. My uncle had autoimmune diseases; rheumatoid arthritis and lupus and had to take treatment with Methotrexate-not sure if autoimmune disease would be genetically passed on (or a predisposition for). Happy New Year to all and look forward to hearing from everyone.

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@cheryl5778 My lichen planus turned to cancer a few years after it had settled into one erosive lesion on the side of the tongue. Everyone thought it was standard OLP but looking back, I wonder if it was cancerous or precancerous all the time. It had been a long time since I had the lacy, stripy lichen planus. That one isolated and painful lesion should have been biopsied much sooner.
I don't know about NSAIDS but I do remember I associated them with a flare up and the development of thrush. I haven't had lichen planus since the cancer (11 years now) and NSAIDS don't seem to harm me at all.
Sounds as if you are doing an excellent job of looking after your mouth!

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@germany2 I saw your post and wondering how u r doing ?

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@alpaca

I had a partial glossectomy and eventually radiation. The nature of the squamous cell carcinoma was that further primaries could arise and they have. But I’m okay – scarred, a bit disfigured, limited eating options but I have a reasonable quality of life.

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I am shocked at all the oral cancer from folks with Lichen Planus. Everything I have read is there is a very small chance of oral or vaginal cancer from LP or LP Scerlosous. I have had both for last11 years and have both checked every three months. Everything has calmed down after a very long bout.

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@march13

I am shocked at all the oral cancer from folks with Lichen Planus. Everything I have read is there is a very small chance of oral or vaginal cancer from LP or LP Scerlosous. I have had both for last11 years and have both checked every three months. Everything has calmed down after a very long bout.

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I do think it is a very small risk. That's why no one biopsied my lesion. As a member of various oral cancer groups I meet a few who have had cancer develop from it. Statistically it is probably insignificant but needs to be watched.

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@elizabethbryant

Was your husband's oral lichen planus. My lichen planus is under the tongue area and on the tongue. I will google bethamethasone.
Any other info. Please send. The name of his physician. I traveled from Central Virginia to John Hopkins about a dozen times
and had part of my tongue removed. Now the lichen planus has started on the opposite side of mouth under the tongue.
Any information is greatly appreciated. UVA did not diagnosis soon enough and this stuff went into oral stage on cancer which
cost me part of my tongue, now I have scare tissue…..not good……and pain…..Thank you so very much for your input.

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I use liquid Dexamethasone (liquid steroid) as a mouthwash and it has cleared my mouth many times. I only use once a day now but with a breakout, four times a day with antitrush combined.

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@march13

I use liquid Dexamethasone (liquid steroid) as a mouthwash and it has cleared my mouth many times. I only use once a day now but with a breakout, four times a day with antitrush combined.

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@march13 Very interesting. When I had bad lichen planus some years ago now liquid Dexamethasone was not available here. Your regime sounds sensible.

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@march13

I use liquid Dexamethasone (liquid steroid) as a mouthwash and it has cleared my mouth many times. I only use once a day now but with a breakout, four times a day with antitrush combined.

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@march13 Along time ago Dr diagnosed me with Thrush he put me on a B Vitamin Riboflavin ,that was some 59 yrs ago I,ve never had a problem since but take 100 mg of B complex This brought to mind after your statement of Thrush

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I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ….I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

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@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ….I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

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Sorry to hear this. Have you tried swishing with coconut oil? It might give you some relief, especially before eating. My oral surgeon ordered Lidex gel for me to use. It does burn because it’s not made for use in mouth but it’s a steroid so may be an option. I have erosive lesions all the time. I had started using melatonin a few months ago & it seemed to have improved. For about 6 weeks I got some relief. It’s tolerable for now. I think you can get straight dexamethasone as a prescription without being compounded if a doc will order it. Best to you

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@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ….I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

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I have tried everything under the sun almost which I listed on my very first post to this group. Check it out. Right now I’m using a DIY mixture of coconut oil & aloe Vera & stir in some Lidex steroid gel. Since the landscape of the tissue in the mouth is now different, I use coconut oil to cut down on friction & rubbing as source of pain & potential flare up.

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@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ….I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

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Oral steroids, Prednisone (?) work really well but of course it is not good to take long term. I had it for relief of pain during an overseas trip.

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@alpaca

Oral steroids, Prednisone (?) work really well but of course it is not good to take long term. I had it for relief of pain during an overseas trip.

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I was on a small dose of prednisone for a year that didn’t help one bit. Then got osteopenia in lower spine from it. I’ve taken a Medrol dosepak several times. I think initially I got some minor relief. Stopping the NSAID MOBIC made all the difference in the world. Have a lot less pain now.

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