Ok, the stuff that matters, Rheumy appointment. No biological until we know if I have cancer. Damn, I’m already sick of that word. I am Shrodinger’s Patient…I don’t have cancer, and I don’t NOT have cancer. We won’t know until we open the box.
X-ray of my SI joint because I have a CT that shows SI joint inflammation, hallmark signs of Ank Spond (no shit, didn’t you diagnose me with that a few years ago???), lots of enthesitis (inflammation of the tendon insertion point), also hallmark of AS, and only a little synovitis (RA).
Who gives a toss you say? Studies show TNF blockers work better for AS than other types of biologicals. But we already know that’s not true of me, because enbrel and humira had little to no effect. Just made me gain 20kgs. Awesomeness. And Humira had me bouncing off walls for 8 months of cyclical anxiety. It. Was. Hell.
No, I don’t want another TNF blocker, thanks. Not when the biologicals that have worked best for me (Orencia – T-Cells, and Xeljanz – JAK inhibiter) are NOT TNF blockers.
She considered putting me back on Xeljanz. Do we all remember what that did to my liver? Have we all noticed how I HAVE NOT had to do a late night ER run in excruciating abdominal pain since being OFF Xeljanz. No, I don’t want Xeljanz either.
So, get an x-ray. Shuffling deckchairs on the titanic, once more.
Hurry up and wait until the surgery is over, and the pathology is back. Find out if its just pre-cancer (no problem for future biological use), cancer, but all cut out (no problem for biologicals) or cancer requiring chemo (probalby no more biologicals, ever). By the way, do you know what the odds are on all this stuff? Tiny.
I told her that I wanted her to prescribe something, so that when the wound has healed (usually 2 weeks post op) and there is no infection, I can start back on meds immediately. Because I am in THAT bad shape.
I went in on my crutches. She said I’ve never seen you use crutches before!’ (Wrong). I told her I mostly use my wheelchair now, because I’m tired. And I fall. But as its 20 metres from the parking lot to office, crutches would do. Despite my shoulder not liking taking the extra weight.
She was sympathetic, but wouldn’t be moved. She said if we’re treating AS, then she’ll switch me to a TNF blocker. But she’ll decide after she sees the x-ray, and they grade the damage that is there on the CT. (Isn’t a CT a far better imaging modality? isn’t all the information RIGHT there already? Isn’t…oh, never mind.)
Shit. I’m ranting. Ok then. Deckchairs. Shuffling. Sorted.
