Well, shock and gasp, I actually got an appointment when I should have! A delightful junior doc who said halfway through "I don't need to tell you much at length because you seem clued up". That was after I showed him my legs and asked if those blotches were livedo reticularis. Thank you forum!
It's a matter of carrying on as I am doing as there was no change in bloods four months ago. They'd like to do another nailfold capilleroscopy and I'll get an appt for that. We discussed the pain, but I'm mostly on top of that. SPF50 as well as hiding from the sun helps with the malar rash ( I didn't tell him I spend a lot on rosascea facial stuff for sensitive skin because that seems to be like discussing lipstick)
We discussed my weight, which remains about 15 kg under what would be good. I explained my experience of dieticians hadn't got me far. I'm starting to have some bowel problems, but they can wait, for now.
Overall, it's currently a matter of getting straight onto my GP or rheumy if I have any sort of flare.
The most exciting thing ( for me) is that I've been given a small dose of fast acting nifedipine to see whether my blood pressure can tolerate it. I'm hoping very much that it can, and helps the Raynaud's which seems to hang around even on a relatively warm August day. Having a cold nose as well as hands and feet is not fun.
Going to try the nifedipine now. Let's see!