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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@microgirl

Hello-I can hear the pain in your words and feel so badly that you are not being heard by doctors. I was diagnosed with oral and vaginal about 6 months ago. My dentist initially mentioned it and referred me to a periodontist in order to try to bring my gums to health. He did the biopsy for diagnosis and then referred me to a dermatologist who is a specialist in LP. (My gyno. said there was no sign of LP down there, but the specialist said, yes in fact it is there as well). I am using clobetesol gel orally 4x week at this point; originally it was every night plus minocycline. I also use a gel vaginally and I swish with an anti-rejection medication 4x week as well. I have seen some difference in my mouth-the extreme redness seems better-I am trying to figure out what foods or liquids affect my mouth. My tongue often feels as if it has been scraped. Stress is supposed to bring it on and I am stressed at the possibility of oral cancer developing as I have had two areas on my body with squamous cell carcinoma removed in the past. I am insulted by the "geriatric" reference! You are so young and with four children-so very busy! I hope you find relief soon.

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There may be some good information here for you. I remember printing some article and giving them to my doctors. I just wanted them to take me seriously. It worked! Becky
https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/diagnosis-treatment/drc-20350874

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@becsbuddy

Good morning all. @deb1956 and @mrsdavis1 Welcome to Connect. Everyone here is a volunteer and we try to help each other through our own experiences. But we are not doctors, so cannot prescribe medications. I’m going to ask @emal2 and @microgirl and @jshdma and @artist01 if they could share their experiences with you. While we wait for them, can you tell me what you have done so far to care for the oral lichen planus?

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@deb1956 I was asked to comment on OLP. Unfortunately I don't have good news for you. This started 6-7 years ago. It is still there, now more like burning mouth syndrome. I have seen top docs in NYC and Boston. They have no answers, except that it often goes away. Mine did not. At first I was treated with a couple of steroid shots. They work for a short time, then it comes back. It has progressed to the point that it affects my speech and has distorted the shape of my mouth. I was told that government websites contain articles by people who treat OLP or BMS, but I have not had time to investigate the great number of articles found there. Hope you have better luck.

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Good morning @deb1956 @microgirl @mrsdavis1 @jshdma @artist01
I found this article through Google scholar. It has some good information. First I googled ‘Google scholar’ which brought me to a new search page. From there, I googled ‘oral lichen planus’. Try it. You’ll find lots lots of articles. Let me know if you find anything helpful.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329692/

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@becsbuddy

Good morning @deb1956 @microgirl @mrsdavis1 @jshdma @artist01
I found this article through Google scholar. It has some good information. First I googled ‘Google scholar’ which brought me to a new search page. From there, I googled ‘oral lichen planus’. Try it. You’ll find lots lots of articles. Let me know if you find anything helpful.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329692/

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@becsbuddy Good article on OLP, Becky. Thanks very much for posting the site too. I've read so much about OLP and have tried so many things, seen so many doctors. Tomorrow is my first appointment with a dermatologist but I'm not expecting anything new. Not negative, just realistic. One never knows though. Where there's life, there's hope. I have a video conferemce with an Oral Medicine physician in Vancouver on May 14th so that might be interesting. The appointment is actually for my jaw dislocation in December, and the ensuing painful months since. I emailed him photos of my OLP too, taken with my cell phone camera, and he's kindly agreed to try to help me with that as well. His services are not covered by my ordinary provincial health care plan, so $215 for a 30 minute call. Ouchie! I'll be sure to keep you all posted on results. X0 Laurie

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@becsbuddy Hi Becky. I checked out your suggestion for Google Scholar. Zowie! A wealth of really good articles on OLP. I've read several so far. A very important one for us is the one on diet choices - functional foods. Foods as medicine. I'm working on that very thing lately because my nutrition has suffered so much, with the double whammy of OLP plus gastrointestinal troubles. Can hardly eat anything that doesn't cause oral pain or gut pain. I've been trying my own version of smoothies, using bland fruits and veggies I know I can manage. I've tried cantaloupe, banana, spinach, carrots, canned pumpkin, honey, pure maple syrup, lactose free yogurt or milk, hemp hearts, lactose free cottage cheese,
sunflower seeds, pumpkin seeds, chia seeds. (Not all in the same smoothie!!) Check it out, gang. X0 Laurie

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@artist01

@becsbuddy Hi Becky. I checked out your suggestion for Google Scholar. Zowie! A wealth of really good articles on OLP. I've read several so far. A very important one for us is the one on diet choices - functional foods. Foods as medicine. I'm working on that very thing lately because my nutrition has suffered so much, with the double whammy of OLP plus gastrointestinal troubles. Can hardly eat anything that doesn't cause oral pain or gut pain. I've been trying my own version of smoothies, using bland fruits and veggies I know I can manage. I've tried cantaloupe, banana, spinach, carrots, canned pumpkin, honey, pure maple syrup, lactose free yogurt or milk, hemp hearts, lactose free cottage cheese,
sunflower seeds, pumpkin seeds, chia seeds. (Not all in the same smoothie!!) Check it out, gang. X0 Laurie

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That’s great @artist01 ! Sure hope the information helps! Will you share any tips you learn? Becky

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@becsbuddy

That’s great @artist01 ! Sure hope the information helps! Will you share any tips you learn? Becky

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@becsbuddy Hi Becky. Yes, I'll be sure to share any tips I learn at today's long-awaited dermatologist appointment. Laurie

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@becsbuddy Hi Becky. I had my first dermatologist appointment this morning and, as promised, I'm here to share the result.
After examining my mouth, the doctor confirmed what I already knew, that my OLP is extensive. That in itself was gratifying to hear because I felt he wouldn't just brush me off! I gave him a long list of prescriptions I'd been given by other doctors, as well as many over the counter remedies and CBD Oil. He asked how many times per day and for what period of time I'd used the Clobetasol.
I told him, just once a day and for one month. He advised that his first line of defence is Clobetasol, as often as SIX times a day. He wants me to try it FOUR times a day, and he'll phone me in one month, as well as see me again in 3 months. He assured me I'll need frequent monitoring by him, including cancer screening, often. I feel good about this appointment. Hope? Maybe. Laur

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@artist01

@becsbuddy Hi Becky. I had my first dermatologist appointment this morning and, as promised, I'm here to share the result.
After examining my mouth, the doctor confirmed what I already knew, that my OLP is extensive. That in itself was gratifying to hear because I felt he wouldn't just brush me off! I gave him a long list of prescriptions I'd been given by other doctors, as well as many over the counter remedies and CBD Oil. He asked how many times per day and for what period of time I'd used the Clobetasol.
I told him, just once a day and for one month. He advised that his first line of defence is Clobetasol, as often as SIX times a day. He wants me to try it FOUR times a day, and he'll phone me in one month, as well as see me again in 3 months. He assured me I'll need frequent monitoring by him, including cancer screening, often. I feel good about this appointment. Hope? Maybe. Laur

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@artist01 I am so glad you had a successful meeting with your doctor! High five!

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@becsbuddy

That’s great @artist01 ! Sure hope the information helps! Will you share any tips you learn? Becky

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@artist01 I hope you are living in Toronto - I need a good dermatologist in Toronto!

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