@zinnia55 Welcome to Mayo Clinic Connect! This disease/headache/problem is pretty common here in Connect.. Have you received any treatment or referrals to specialists like a rheumatologist? They are the ones who mainly treat this disease. Oral surgeons and dermatologists also get involved. You’ll find out more as the members get into this discussion. I have posted a link to all of the discussions about OLP. You can read through these and get ideas of how other members cope.
https://connect.mayoclinic.org/group/autoimmune-diseases/
Sure hope this will get you started!

This is great information, I too think I can and would rather have a boring diet then the nightmare of olp in a flare. You are awesome,thank you.

Thank you, I feel Like I just caught a break and found a dermatologist that will see me next week and has treated this before, so I am hopeful . I also saw my dentist again for the first time since diagnosis and had my teeth cleaned by the best dental hygenist and she treats two other people with OLP. She did a HOW assessment for extra cleanings and gave me ORA care mouth wash. I have to say the cleaning was not fun but my mouth feels pretty good today. So there are a few little wins! Hope everyone is doing OK today!

Hi the biopsy was at an oral surgeon's office On the bottom lower outer cheek next to gum 2 stiches that were dissolvable. It took about 7 days for them to get out of my mouth. The doctor was very good and they numbed the area and it was quick. It was more painful the 2nd day, mostly just sore. It did not cause an OLP eruption of any kind which was great and surprising. Let me know if you have any other questions. Have a good day!

Hi all, just checking in to give an update on this hateful disease. I found a great dermatologist who put me on liquid dexamethasone (swish and spit) and tacrolimus ointment 2 x a day. My mouth has really cleared up except for a few stuborn spots. It has been exactly 3 weeks. I am really happy with the results and scared to death about when I stop using these meds. The dermatologist said the idea is to put it to sleep and not wake it up. My GP suggested looking into a very low dose of naltrexone, it would be an off lable use based on its antiinflammatoey properties. Anyway has anyone heard of this or tried it?

This is so hard. My stress is way lower so I was hoping for remission. I swab my mouth at night with clobetasol. It works the best. I also saw someone posted using a red light. I have been using that for 2 weeks. I have some improvement, but not sure what to attribute it to!
If the person that posted the red light remedy could jump in and give me more specifics about their treatment i would appreciate it. I can’t eat any spice! I am pulling myself up and accepting this but it really sucks. My ENT just basically said the same thing! “ do whatever works, I’m sorry, this is a tough one with no answer “ I appreciate the empathy but a remedy would have been more helpful!