@deb913 Hi Deb,
Just seeing your post. I'm 4 yrs post allogenic BMT and have cGVH. I've been given oral dexamethasone rinses and topical tacrolimus for flares of my oral symptoms (tongue/mouth/lips) and they really help.
The delays in diagnosis are frustrating. Reading doctor notes for the most part has been frustrating too-it seems more important for a visit to fit an established logarithm-but when someone writes a thorough/accurate note, I've found it so validating...someone really hears and sees me.

I have a lot more symptoms than you, and take an array of drugs; it's hard to sort out what helps what, but I've been on axitalimab for ???months and haven't had any real side effects.

Good luck!