Oral Lichen Planus

Toothpaste is important. Avoid Tom’s of Maine for their recall and moldy factory inspection
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Thank you for your comment. It gives me hope that I can find a doctor who will be able to help me

Thanks. I am currently using a kid’s toothpaste and very soft toothbrush. I do need to look into my diet. I have had allergies all my life.

Dentist referred me to a maxiofacial specialist who prescribed Elidel. It’s an off label use, but helped immensely. I keep it around for flares and it hasn’t failed yet in many years. Good luck with your search—the pain is no fun!

That is so encouraging. Thanks

It was my periodontist who referred me to the oral pathologist. In Canada you cannot see any specialist without a referral from a doctor.

The oral pathologist prescribed Prednisolone rinse which did nothing for me. Then he prescribed the Lyderm gel.

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.

Good to know someone else has flares with dental work. Thank you for sharing.

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?

Oh- and be prepared to get oral thrush (candidiasis) too from the steroids. Which also makes the mouth inflamed, fun!