Oral Lichen Planus

@diana70 Welcome to Mayo Clinic Connect! I think that you will find that there are many discussion on oral lichen planus. I have a few resources for you. This first one is by the Autoimmune Organization. They should have help for you.
https://autoimmune.org/resource-center/finding-a-physician/
This site is from GARD (genetic and rare disease org)
https://rarediseases.info.nih.gov/
And, finally, NORD ( national organization for rare diseases)
https://rarediseases.org/
Take some time and read through the other discussions on OLP.

Thank you for the information. I would have thought being near John Hopkins would give me access to some specialists, but I have had no luck. OLP is a painful condition. It feels like having a mouthful of canker sores. I can’t figure what caused this current flare. I have been stressed because of the need for recent dental work. The flare up is on the side that didn’t have the dental work.

Ask for a referral to an oral pathologist. That’s who I saw, and he prescribed Lyderm gel. Should not be used for longer than 7 days, but my mouth took about ten days to clear. Now I use the gel only when I have a flare up.

Your information is very helpful. I have not been sure whether to look for a periodontist, oral surgeon, ENT, or even a dermatologist. I will see if I can find an oral pathologist. I was not lucky to have the flare up happen around the holiday time. I did manage to see my general dentist because I thought the new flare up might be something other than OLP. The dentist did confirm that it was OLP which he thought might have been caused by trauma. I don’t remember biting my cheek but maybe I did in my sleep. Really appreciate your help.

I have found stress, acid foods, dental work are just a few things that caused me trouble. Educate yourself. Have you looked at google/ scholar. To fine it go to google. In the search bar type in google/scholar.
I wish you the best with this no fun.

Oral lichen planus is often first diagnosed by dentists and dermatologists. Most experienced dermatologists have comanaged more involved cases with dental professionals such as oral surgeons if a biopsy is required from a difficult to access mouth part.
The oral pathologist or dermatopathologist reports on
a specimen to confirm a diagnosis. LP can involve other areas of mucosa that can be checked as well.
Management is usually a topical steroid in gel or various
compounded medications. Topicals are used “off label” with a track record of safety Good practice is frequent
checks at intervals.There is an increased risk of oral
cancer in chronic situations.

Thank you for the information. My difficulty has been trying to determine any expert in my area who is interested in managing OLP. In the past years it was not a problem as I had the form of OLP that caused little pain and seemed mild. Recently I had some dental work done and OLP changed into the more erosive form that is extremely painful. My dentist prescribed lidocaine. I am having difficulty getting my compound med, Duke’s mouthwash, filled. I think I may need a thicker consistency med this time. I am hoping to get an expert on OLP to manage my case. I really appreciate any insights that others can give me. I am just struggling to find someone to manage my case. Thanks for your insights.

Stress and dental work definitely cause flare ups for Me. I definitely will check out google/scholar. Thanks for your input.

My son has oral LP of the inner cheeks and gumline.
He works long shifts as a first responder. He was prescribed a steroid asthma inhaler and was instructed to puff on the areas instead of inhaling. He can keep in his pocket for convenient relief. His derm has been prescribing it for years. They use a steroid that has minimal systemic side effects as the active ingredient.
Costly if not written to be covered by insurance.

No Dr recommendations but…I found that my toothpaste (design for sensitive gums) that had a whitening feature might be a source of irritation. I switched to a brand called Happy Tooth and have not has a flare in 3 months…I also avoid acidic foods and anything spicy…