Oral Lichen Planus-need specialist

@mjq Oh, I’m so sorry about the oral lichen planus. I’m not sure about a specialist at Mayo Clinic and Mayo can be difficult to get in to. There are two organizations that should be able to help you find a specialist in your area:
GARD the Genetic and Rare Disease organization
https://rarediseases.info.nih.gov/
NORD, National Organization for Rare Diseases
https://rarediseases.org/
Here is a discussion with some answers to your question:
https://connect.mayoclinic.org/discussion/desperately-seeking-a-specialist-for-my-oral-lichen-planus/
Can you tell me a little more about your disease? How long you’ve had it and who diagnosed it. Were you given any treatment options?

Thank you for your suggestions. I will try both.

I had oral lichen planus for several years. I know this is rare, but after awhile a bump emerged in my gum. It was painful. I used magic mouthwash and cyclosporine. Nothing really helped. Turns out, it was cancer. The oral lichen planus irritated the gum to the point that it turned cancerous. Surgery and radiation are next. This is quite rare. Should you want to check out any mouth bumps, find an otolaryngology practice and go yearly just to make sure the irritation is lichen planus. Best to all.

It started about a year ago with one or two sore that would heal within a week. In Dec. 2022 it became more full blown. My dentist and an ENT diagnosed it. I will have a biopsy next week. Was given 2 rounds of oral steroids and a steroid paste which calmed it down but it did not disappear

@mjq ask your doctor for a prescription for Lyderm gel. My oral pathologist prescribed this and I was concerned because it is a topical gel but my pharmacist told me it can be used off label for oral lichen planus. Make sure it is the gel and not the cream or paste. Squeeze out a pea sized amount and rub in into the sore areas of your mouth gently. Leave it on your gums, cheek or wherever you need to apply, wait a minute or so and then spit out the excess in your mouth, but don’t rinse. The gel is bitter tasting, but not objectionable.

I found Oracort inconvenient to use and fiddly. Lyderm gel just glides on to the sore areas and you don’t need to sit around with wads of gauze in your mouth like you have to with Oracort.

Thank you so much for taking the time to give me advice. Your having gone through it, helps make practical suggestions.

I went to severa doctors over the past 3 years. My OLP appeared out of nowhere. They didn’t even address it anymore. Went to an ENT and he did deviated septum procedure in my nose, checked my ears a few times.. never mentioned the OLP. Anymore and that was why I went to him in the first place. I saw GI doctors.. nothing, only procedures to bill my insurance. I read about dental procedures and teethwhitening.. I had it done a few months before my OLP came in… I used whitening toothpaste every day since.. I stopped using it about a month ago and my OLP is completely gone. If anyone is using whitening toothpaste, even mild formulas.. stop using it.. it was the root cause of my OLP. No thanks to the doctors.

@libbyducker I agree with you. I find whitening toothpastes cause flare ups in my mouth too. I cannot eat mushrooms in any form either - not even mushroom is gravy, cream of mushroom soup, etc. Even if mushrooms can be picked off pizza and meats, my mouth can flare up because merely being touched with mushroom can cause a flare.

My oral pathologist prescribed Lyderm gel (has to be the gel) and after suffering for almost twenty years, I finally have found relief from that.

@libbyducker Welcome to Mayo Clinic Connect! I’m so glad that you found us. And, you jumped right into the discussion—great!!

Thanks for the tip on whitening toothpaste. I’ll switch…can you share what brand you switched to?
Also, about a year ago, I bought whitening strips. I was not in a flare at the time…but boy did a raging flare start…and lasted for several weeks…just after one application.