Oral Lichen Planus, how are you coping?

@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!

@becsbuddy @zinnia55
Gastro also treats EoE, OLP, ELP etc. In fact, at Mayo I was diagnosed by an EGD for EoE and ELP. He wants me to follow up after each EGD to treat the strictures caused by ELP and to be seen by a dermatologist. My dentists and perio are also keeping an eye on things. Diet has changed alot - for the better. Good luck!

@chrisanon Wow, you must be a font of information! Sounds like you have a very good team!
How are you doing? It must be difficult trying to keep up with the doctors and appointments. Do you have a special calendar? I try to keep my6 doctors separate, but it can drive me crazy.

@becsbuddy Hi! Thank you for the response, I have been to a dentist, had a biopsy by an oral surgeon, prescribed steroids by ENT doctor and told by immunology they do not treat, I have not seen a rheumatologist but I called one and they said they had no idea but they would see me. I just spoke to a peridontist today who said they do treat it and can see me in Jamuary 2026. I am going to make that appointment but its been a real struggle so far. Its amazing to me that I am having such a hard time finding help. I have been following some of the links and you are right the members information on this site has been so helpful.

@chrisanon Thank you for your response! Have you figured out any triggers? What are you eating these days, if you want to share 🙂

@zinnia55 Hi- The list is comprehensive. No spices, no fried, limit fats. no soda/pop no bubbly, no chocolate, no acidic, no alcohol, making sure i eat slowly, sips of mostly temperate water every bite. So limited everything -even in moderation. Boring diet, but rather that than the agony. Make sure you brush, floss so no good caught between teeth or cheeks. Not eating late. It takes discipline and a passion to have control over the OLP, ELP. It works for me. Took a long time to get used to eating this way, but now- I can- in moderation- have something a little spicy if I drink swig water to wash it down.

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.

@zinnia55 Look up the Mayo Clinic recommendations on Lichen Planus and ELP, OLP- They offer a number of recommendations. Other places like Cleveland Clinic, Johns Hopkins, etc- The more informed you are the better your options when you do see someone in person.

Very best to 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!

@zinnia55 how was the biopsy done? Where was it located? Stitches?