Oral Lichen Planus

@lkirnbauer it took me years to realize this falls under dermatology! Mayo is under dermatology but they have Oral Medicine doctors in Derm department. There is a specialist called Oral Medicine. These are oral surgeons who only do oral diseases but very few of them. Dental schools or University Med Schools

Merci pour votre retour.
Pour le moment j’applique le traitement du Stomatologue français .
Thank you

@lkirnbauer I have it on sides of tongue , cheeks , roof of mouth and underneath sides of tongue.

Hello OLP community,
I went to a Naturopathic physician last week who is recommending Low Dose Naltrexone (LDN) for OLP. He would like me to trial it for 6 months. Does anyone here have experience with LDN?
FYI, he is recommending a high intake of protein to promote healing of my mouth. For me, that equates to 107Gm of protein per day. Not easy! I'm going to a lab in a few days to have a boatload of tests per the Naturopath.
My Dermatologist said, "You need to find out what you are allergic to." OK. Working on it.
As a follow up to my previous posts, the Dexamethasone steroid rinse burned my mouth, but the water mixed with salt and baking soda is really soothing and calms things down well. Coconut oil pulling seemed to make my mouth worse. I do use Fluocinonide gel once in awhile when the sores in my mouth flare. The Desonide gel to my lip caused a major flare after I used it for several months. Just Aquafor now. Aquafor is my best friend...I don't go anywhere without it!
I am continuing with Cleure toothpaste, unflavored Closys ultra sensitive mouth rinse, Aquafor 24/7 to my lips. Avoiding ALL spices and chemicals. My food intake is very simple (but boring)...nothing processed. All fresh and mostly organic when possible. I did a ChatGPT search for best products to use in the shower...Vanicream shampoo, conditioner, soap. Lips don't burn anymore when I get out of the shower.
I'm also doing the best I can to not be over busy and over rushed. I have a follow up with the University Oral Med specialist next week. I'm thinking they might want to throw more meds at my mouth. I'm thinking, pay more attention to the triggers and improving overall health in general. We'll see.
With all of the above, I am pretty comfortable.
Hope you are all doing well or better. Anymore words of wisdom to share with the group are helpful.
Take care!

@kathy333 sounds like you are on right track. I did patch testing thinking it was something I was allergic to. It was done by a Derm pathologist at St Louis University. It has been helpful and I have an app from the American society of contact dermatology on phone to check all products I use on face or hair and eat. On all these other meds every one reacts differently to these and you keep trying until you find the best solution for you. Keep forging ahead. Sounds like you are getting good responses. What a horrible autoimmune disease. Not much support with clinical trials which is too bad.

@kjoeme1978
I found that I have to avoid foods with oxalates in them, spinach and kale are high in them and I just found out arugala has it. The ''spring greens'' salad producers slip in arugula, to me, it's bitter, peppery, and feels like hot sauce on my lips, so it goes into trash when I pick it out. Other foods on the high oxalates list are: bran cereals, wheat germ, quinoa, soy products, buckwheat, beets/beet greens, rhubarb, swiss chard, okra, leeks, sweet potato and white potatoes with the skin on, and almonds and cashews. I can eat almonds if the skin is off. I peel the skin off the sweet and white potatoes and don't seem to have problem if I do that. Just type in foods high in oxalates for tips on avoidance and how to cook greens to reduce oxalates, etc. There definitely limits on what you can eat, many of the foods I've had to cut out were ones that I loved. I'm on 200 mg of hydroxychloroquine orally, and apply tacrolimus ointment to flares on my lips. Chlobetasol also works on lip flares, but it's a corticosteroid and is short term only. I've not heard of using LDN for OLP. I'm sorry you're having to deal with this, I was diagnosed with OLP in 2019....it's a journey, God bless!

@ladonnai I started radio frequency on lips to give them more stability. I had lost all feeling and sagging. I have had 4 treatments and they are doing better. I don’t have open sores. This is totally outside the box. I am on 400 mg hydroxy and it has been 9 months. Some doctors say it can take a year. I don’t feel it is ever in remission. But thanks for your insight. Thanks for sharing. I am basically doing the same thing

@lkirnbauer I have it on the upper right inside cheek. When I have flares, I have sores all through my mouth and tongue. I get Squamous cell carcinoma on my skin alot so that is how I ended up with my Skin Cancer Dermatologist being the one that took my OLP serious. No other doctor cared. My ENT did the original biopsy but only offered an oral swish medicine that didn't work. My PA and Dr. at the skin cancer office are amazing. They care and don't give up on me when a treatment doesn't work. This is my history.

@kjoeme1978 I have to say I've never heard of radiofrequency used on OLP lips! OLP is something that I was told was not curable, just maintainable....those were disheartening words.
One thing else that I have to watch is sun exposure...find the widest brim hat (like a life guard's hat!) and put a zinc based ointment like Elta MD UV lip balm, it keeps the sorest spots on my lips from getting more inflammed. It goes on white due to the zinc but the color fades as it warms on my lips.
Lots to learn about OLP, keep searching for ideas that might help for you.

@sadea0208
Be careful with that Dexa rinse if you’re pre or diabetic. It raised my blood glucose number.
Sigh….moving on.