I went for a second opinion with a different hospital system. The one that wouldn't treat my musculoskeletal pain, but that has since been resolved (by the system that did treat me and also discovered my autoimmune condition).
I tried to get in with their regional(neighborhood) health center, but was told that they don't treat SAPHO so I had to go to main campus to their Rheumatology Institute. My new doctor is wonderful, she is a rheumatology fellow and her mentor is very kind and well accredited rheumy. They got me in in two days, sure beats waiting three months to see my original rheumy!
They ran different labs and repeated some old ones.
My level of inflammation is down significantly, but symptomatically, I don't feel it. So maybe the DMARDs are helping.
I had a bone scan last Thursday, to confirm or deny SAPHO and to see if they can get a better idea of what is going on.
It's rainy today and I'm feeling it. want to sleep, but gotta get some of this stuff done!