Oral Lichen Planus

OLP is an inflammatory condition. Sounds like you were rocking along for years just fine with a mild case and now your immune system tipped over into a not-mild version, which is a huge bummer.

How do we treat big flares of inflammation? Steroids! High potency topical steroids. If they are mucking around with dexamethasone liquid- demand a higher potency topical steroid. If you have tried a higher potency steroid- like clobetasol and your oral erosion has not healed- demand systemic steroids (pills). You should not need to take steroid pills forever, but a bad flare of OLP needs to be properly treated because 1) you are miserable and 2) you have a damn hole in your mouth that isn’t healing. Also, congratulations you are now in that higher risk category that has an increased risk of oral cancer so please do keep seeing your dentist regularly to have check ups and to keep an eye on everything.

Sometimes the same provider you are going to CAN manage your condition but they just don’t realize how miserable you are…? I definitely did this with my eye doctor - my eyes were “healthy” without any damage to the sclera despite being dry, so I never really conveyed how bad my dry eye symptoms were and how much they were affecting me. Once I clarified that my symptoms just were not under control, we could start treating my eye inflammation too. (I know we are talking about mouth inflammation)

Steroids, lots of them. I was just reading that (while possibly gross tasting) any steroid you could use on any mucous membrane could be used in the mouth - this was specifically in the context of treatment for OLP. So…. The same high potency clobetasol ointment that is used for vulvar lichen planus could be used for oral lichen planus in theory. Again, who knows how it might taste. I suppose I could report back.

I usually frame it to my provider like this: I’m not comfortable, I know we need to do more, can you do that for me over the short term to get this under control and if not, who can you send me to to make that happen?

I’ve had OLP mostly under control, but recent dental work definitely caused what is now a flareup. I have large tori (bony areas under the tongue) and the dental X-ray films cut the skin and this has caused a lesion. I need to work with my dentist to avoid this in the future.

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…

Also, I had to look up Duke’s mouthwash (similar to Magic mouthwash as I suspected) and it is not not not a potent steroid. It’s contains a super weenie steroid. You can only get stronger steroids from what you’ve been treated with so far. It’s also got Benadryl and an antifungal in it to prevent oral thrush (candidiasis), but with that weenie of a steroid, do you really need it? Joking! Joking! If your pharmacy is going to all the hassle of compounding this for you anyway, can they swap out the type of steroid? Obviously with a prescription.

I’m using liquid dexamethasone right now - like what a kid would be given who can’t swallow pills. And the fake berry flavor and red dye is… not my favorite. It was doing fine for the last 9 months or so, but this last flare it really didn’t control anything and I was increasing in inflammation and getting daily small ulcers despite using the dexamethasone (I only use as needed). So, I’m going to go talk about: do I need to be dosing it more than 2 times a day as my prior provider wrote for (probably from what I’ve read) versus using a different steroid altogether.

Hi All,

I have been fighting OLP for 5 years, with 3 dermatologist, oral pathologist, dentist, ENT and now an oncologist. I am to begin a mouthwash this week. Iv'e been taking Acetretin for several years which has helped keep it in check, but it is not working anymore. My out breaks had been manageable but now my tongue is the main issue. For some reason I had a big outbreak and now I'm trying to find something to just ease this up a bit.

I'm interested in using tacrolimus ointment. Has anyone been advised of developing cancer from the use of tacrolimus? The oral pathologist and dermatologist said no to this

I"m so glad I found this forum!

Hi All,

I have been fighting OLP for 5 years, with 3 dermatologist, oral pathologist, dentist, ENT and now an oncologist. I am to begin a mouthwash this week. Iv'e been taking Acetretin for several years which has helped keep it in check, but it is not working anymore. My out breaks had been manageable but now my tongue is the main issue. For some reason I had a big outbreak and now I'm trying to find something to just ease this up a bit.

I'm interested in using tacrolimus ointment. Has anyone been advised of developing cancer from the use of tacrolimus? The oral pathologist and dermatologist said no to this

I"m so glad I found this forum!

Hi, @louise05 and welcome to Mayo Clinic Connect! We’re glad you found this forum also!
https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/ This site talks a lot about OLP and how you can help yourself.
I didn’t find anything specific to tacrolimus just members referring to it. I’m sure other members will join the conversation soon unless they had too much fun on New Years Eve!