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?