Another rheumy review reveals that all my blood markers are back within or near normal. This includes my CK, which has gone down from over 2,000 to 60, thanks to 4 months or so on 25mg methyl prednisolone. Only my ANA remains stubbornly on 1:2,650. In addition, the chronic nausea I've had for the past year has vanished, and my daily episodes of sweating and shaking are less intense.
On the other hand, my muscle weakness has not improved, and I am still so incapable of effort that I am effectively housebound. The high pred dose has also made heartburn a daily (and nightly) misery.
We talked about trying to find another DMARD or biologic that I *can* tolerate, but as he said, "we are out of easy options". The conclusion was to taper the steroid to between 6-10mg daily and review in 2 months, with the hope that I can find a dose slightly higher than normal which is enough to suppress my auto-immune response and cover my adrenal insufficiency, but not so high that it causes serious side-effects. As he said, "but we might have to accept some steroid side effects as the lesser evil".
He thinks the endo should be doing more to address my exhaustion etc, but as I said, the endo thinks it's all down to rheumatology to sort out. "That's what everyone says," he moaned.
Meanwhile, an inadvertent glance in a mirror yesterday afternoon revealed that my eyes are so swollen and bruised-looking, I could easily pass for a post-fight heavyweight boxer ('but you should have seen the other guy').
My life in The Twilight Zone continues on Friday, when I see the specialist to discuss my recent sleep study. x