The new rituximab protocol worked like a charm. Zero issues during the infusion. 500 mL dose, starting at 25 mL/hr, then 50, then 100, etc. One minor addition was that the nurse left the saline line open just a bit. That’s just her way but it’s a difference from last time that I want to maintain.
Now, that said, it’s not all roses. As always, the steroids in the pre-meds counteracted my anxiety drugs and separately set off my stomach pain. I’m still dealing with the stomach pain here days later. It’s incrementally improving so hopefully I’ll be past the pain soon.
The first six months of rituximab have been relatively smooth sailing, as far as the GPA is concerned. I had a minor flare after getting the COVID vaccine, as I always do, but otherwise, my GPA symptoms have been significantly improved. My blood work has been normal for a typical human, apart from my continuingly low (but apparently sub-clinical) immunoglobulin levels. I still have fatigue and GI issues but nowhere near like when I was on methotrexate. My evenings are still full of me being pretty exhausted on the couch despite working from home at a desk job.
I’ve had other issues too, unfortunately. A trip down Cymbalta lane led to ocular dryness problems that persist today. After wearing them most of my adult life, I am forbidden from wearing contacts until further notice. I am also currently on eye drops that leave my eyes burning for multiple hours a day (which is bizarrely better than the condition they’re resolving). Further, oral surgery I had two years ago developed a problem and had to be corrected. I’ll spare you the details but it wasn’t unexpected and the surgery went really easily and well. I’m still dealing with a minor follow-up infection which we can probably thank rituximab for, if we’re being honest. But it went about as well as one could hope for.
So, what’s next? In a couple of weeks I’m getting hearing aids to help with a big divot in my hearing range that happens to overlap with alto voices. I’m also hoping to look at my knees and maybe start to make some progress on PT or other interventions there so maybe I can exercise again. This body is all deconditioned and awful and that isn’t helping my quality of life. But we’ll see. Life has a tendency to throw bricks at me when I start making plans.