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.