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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…
We’re going to try rituximab one more time. The planned dosage is 500mg with an extra slow start to the infusion. The previous dosage was 1g which was always really confusing to me. No health organization that I’ve found, apart from my HMO, recommends a dose that high, particularly for someone like me who has “limited” gpa. 500mg is the usual recommendation for GPA…
sad trombone The second round of rituximab was a failure. I developed histamine-type reactions extremely early on and the decision was made to discontinue treatment rather than blast me with steroids again. So what does that mean? I have no idea. I have a follow-up with my rheumatologist at the end of the week to discuss. I really don’t want to go back to MTX but there aren’t a lot of…
Well, it seems I survived round 1 of rituximab and I’m staring down round 2. Oddly, for me, there’s not much of a story to tell. I spent 8.5hrs at the infusion center, had a nice private room somehow. My partner came along which was very nice and they were wonderful both for support and wrangling the nurses when the infusion pump started beeping for whatever reason. I had one minor…
sungo: doctor quote of the day: survivable does not mean tolerable r: oh, were you discussing Highlander 2? sungo: I’d prefer a marathon of Highlander 2 to what we were discussing. g: that is a visceral choice of the options at stake Oof My rheumatologist, at my most recent follow-up, asked me to detail my current condition and how the meds are treating me. I talked about my experiences with…
I formally received a diagnosis of GPA on Sept 16 2024. I’d known for a few days thanks to the miracle of MyChart test results and a lot of web searching. The formal call with my rheumatologist however was Monday Sept 16 2024. I was going to tell the story of how I got to the diagnosis but I think it may be more important to talk about the time since. Warning: this is a dark one. You may not…
3.9. my GPA is 3.9, drug down by a poor showing in phys ed. Awful attempt at humor complete. Look, in the chronic illness game, you take the humor where you can. My situation is … complex and I’ll talk about the rest eventually. But GPA is the big one, the one that brings all the doctors to the party (well, like two, it’s a small party). What is this thing, and what is my…
Hi. New site, new blog. Why? I considered, and even actualized, turning all this off, leaving the web entirely. Most of my domains dump out at my resume now. I was, am , tired of the politics of just being here, feeding the LLM machines. Just by putting this text on the web, I am feeding the slop machine. I can resist with various methods but the developers of the crawlers are smart and will get…
I’m sungo, a chronically ill techie with big delusions of being neither. To pay the bills, I sling code. Those details are over on my resume . I’m autistic, ADHD, pansexual, polyamorous, non-binary, physically disabled, and chronically ill with a rare autoimmune disorder called GPA (Granulomatosis with Polyangiitis) . When I’m not doing a capitalism, I’m trying to stay…
Let’s start this with some nerd cred so we get some proper context. I loves me some open source operating systems. I’ve been running linux (debian then slackware then rock linux then gentoo etc etc up through to arch) and freebsd for an eternity on my desktops and laptops and servers. Yes, I’ve installed slackware from floppies. I started off with windowmaker as my window manager, then e16…