Erosive oral lichen planus

@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for other conditions in this category (e.g., diabetes). The several doctors in my experience know nothing about these conditions (especially BMS), and want nothing to do with them. A top specialist in oral pathology in NYC told me there is nothing to do with BMS, it usually goes away by itself, except sometimes it doesn't. And so I was dismissed.

@jshdma I don't think there is a cure for autoimmune diseases. As far as I know lichen planus is such a disease. From what I can see here the combination of the dexamethasone mouthwash and nystatin sounds like good advice. I acknowledge that these conditions are just plain awful.

@jshah the specialist sounds very rude! Have you thought about a dental specialist? He/she might have some ideas or know of a good doctor to send you to. A dentist who’s been around for awhile. I’ve used the dexamethazone mouthwash for tongue ulcers from steroids. It’s expensive, but it works

@becsbuddy Thanks for the suggestion. Yes, I have been to a couple of dentists, who have no useful suggestions. The specialist in question was a dentist!

I have been using this combination for 10 years and I am able to control oral LP. If I’m having an outbreak, rinse mouth 4 times a day. Only one doctor that I know of in this big city handles oral LP. Very sad. In response to LP being a autoimmune disease,it has not been proven.

@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for other conditions in this category (e.g., diabetes). The several doctors in my experience know nothing about these conditions (especially BMS), and want nothing to do with them. A top specialist in oral pathology in NYC told me there is nothing to do with BMS, it usually goes away by itself, except sometimes it doesn't. And so I was dismissed.

@jshdma I heard the same thing about OLP 10 - 15 years ago. My mother had lupus. Cortisone relieves symptoms but long term causes huge problems. I will ask an oral medicine specialist here in NZ about BMS when I see her next. I'm a patient rep on a committee she is on. She is not the sort of person to give up on people.

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.

@jshdma I have emailed my oral med specialist contact and she said she would seek out one of her contacts in the US for you if you could tell me what part of the world you reside in. She says these are difficult to treat but as I said, she is a very dogged specialist and there's a tiny little chance that something like this could help.