I am on Tacrolimus ointment for my OLP.

I use Tacrolimus ointment twice a day also for my OLP. I haven't used it on my tongue but I use on the inside of my mouth on my lips. I haven't had any side effects and I have been using it for 5 months. I like the Tacrolimus better than I did the Clobetasol 0.05% OIN.
OLP is so frustrating because it is hard to find relief. I tend to have flares where it is really bad and times it is calmer and I can tolerate it. I am lucky to have found a wonderful Skin Cancer doctor who cares and does a lot of research. I haven't been able to figure out what causes my flares. I have had OLP for around 6 years. Sometimes I use Orajel Antiseptic Mouth Sore Rinse for Canker Sores & Gum and it helps but doesn't last vIery long. I like it because it helps with my tongue when the OLP flares include my tongue.
I hope you find relief. I do not know if it is bad to use the Lidocaine with not

Tacrolimus clobetasol troche is the only thing that has worked for me. My problem is that the only compounding pharmacy I have found that will compound it is in PA. I’m in VA.

I haven't heard of Tacrolimus clobetasol troche. I am going to ask my Skin Cancer Doctor about it. I am using Tacrolimus now and have used clobetasol in the past.
Thank you for sharing. I live in Reno, NV.

@patticlarke09 Is OLP cancerous? I have lesions on the back of my tongue and white lacey patches on the inside of my cheeks. I have started wearing a 7 mg Nicotine Patch and the lesions on my tongue are getting much smaller and the white patches are lessening. I have never been diagnosed by a doctor or dentist that I have OLP, but found it myself while reading these Group chats about it. I guess I should question my dentist about why he’s never pointed this out to me!

I do not know if OLP is cancerous. My ENT did a biopsy on my mouth sore when it was on the upper right inside by cheek. However, he didn't offer any solutions or take how painful it was serious. I get a lot of Squamous cell carcinomas. When I told my Skin Cancer/Dermatologist about the OLP she took it serious. She is a PA and along with another Doctor in the practice has been working with me for over 4 years. They ran allergy tests to see if it was my dental fillings and implants that caused the OLP but they came back negative. They are the best because they care. We have tried several medicines and some work for a while then they quit. Right now I am taking Hydroxychlorquine and Sotyktu and usint the Tacrolimus cream. I use clobetasol when I have the bad flares. Unfortunately, both the Hydroxychlorquine and Sotyktu are slow acting and I have only been taking them for 3 months. It can take another 3 to 6 months to get into my system.
The problem is finding doctors that will listen and care. On these group chats, I am amazed at the variety of doctors than help patients. The sad thing is, how few doctors take it seriously. I guess because OLP is not very common like other illnesses. I never would have thought my Skin Cancer/Dermatologist would have been the ones to help. Some people have found Oral Surgeons and ENTs.
I hope you find relief.

@cgrasse54
Thank you for that info. I’ve used clobetosal , with good results, but never remission.
I wanted to use it with the Tacrolimus but AI said that could be potentially cancer causing. Has your doctor addressed this concern? My 3 doctors really do t know what to do with me.

Hello everyone,
It is very sad, but reassuring to read to we are all getting 'the run around' with GP's, dentists etc.
I live in Queensland; I attend a teaching hospital Dermatology clinic in Brisbane, Princess Alexandra hospital. Started taking Hydroxychloroquine in Feb 2026. Dosage is 200mg daily.
For the 1st time in 6 six years, first biopsy in 2021, I can see and feel some positive results with this disease.
The female doctors at the clinic have also confirmed that I had LP lesions on my vulva; and a very strong suggestions that I also have ELP. ELP leaves you with swallowing difficulties, choking episodes, and well developed disinclination to eat any solid foods. I go for natural, pot set, no added sugar, not Greek yoghurt. I take 40mg of Somac in addition to Hydroxychloroquine, and that seems to have settled down the lesions.
Keep asking questions of your doctors, don't be satisfied with 'don't know, haven't seen it before'. Dr Google can help answer some things.
I've read the research is going on about T-cell interactions with the immune systems and this disease. Sounds hopeful, in that there may be a way to turn off the overreaction in the immune system which causes the cells to attack.
YOU ARE NOT ALONE.
Thanks