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 maintenance from both american and european agencies. So we’ll see. That infusion is scheduled for July.
In the meantime, we’re waiting to see what the first rounds of rituximab are going to do. My latest bloodwork is … mixed. My immunoglobulin numbers are low (as they have been) but stable. Neutrophils are high again. C-ANCA titer popped back up but my PR3 antibodies stayed relatively stable. Mostly it reads likes methotrexate has left my system and ritxuimab hasn’t fully caught up.
Symptom-wise, I’m doing ok. Tinnitus has gotten annoying. My joints are a little achey. Nerve pain is elevated. The weather’s not helping, I’m sure. This too reads like I’m in between meds.
Side effects. I’ve not mentioned them because so far I’ve had none, apart from the reactions on infusion day. Does that mean it’s not working? Does that mean that, apart from my reactions on the infusion day itself, I’m one of the lucky ones? Don’t know yet.
So, we’re in a waiting game. I’ll get another blood draw in July prior to the next infusion and we’ll see how things look then. Unless, of course, I start getting sick and there’s evidence my immune system really crashed out. In theory, the effects of RTX should peak in March, maybe April.
Apart from the “and it might kill you” bits, this waiting game is probably my least favorite facet of rituximab. With MTX, I knew what it was up to in the first few hours. I could tell that subq was working better (and with worse side effects) in the first day. With rituximab, I have to wait months. The ops nerd in me also wants constant blood work so I can track how things are going. Waiting months between blood work is also a struggle. The long term wins are worth it but I struggle with patience.