Last month, I started on Rituxan. My first infusion was going to be run over four hours, but ended up taking four and a half hours. I was fine for the first hour and a half and then my throat started to feel really raw, I began to cough and eventually I was sneezing so I asked the nurse if this was a reaction to the infusion. Turns out it was. At first, she tried to talk me into toughing it out. I am really drug sensitive so didn’t think this was a good idea, especially when she said she would be turning the flow rate of the IV up. I insisted she give me some Benedryl and steroids to stop the reaction. She turned the IV off for about half an hour to give the medications time to work and once I felt better, turned it back on. I was fine for the remainder of the infusion. The first day after the infusion, I felt okay. By the second day, fatigue hit and I spent the next two days napping off and on. It took me a bit to figure out that this was how my body was dealing with the infusion.
For the second infusion, two weeks later, I was told to take 50 mg of prednisone (steroids) early in the morning, instead of late the night before, with the hope that I would sail through the infusion more smoothly. I woke up at 5 a.m. to take the steroids. Not the best taste first thing in the morning (or any time for that matter) but it seemed to do the trick. This time, I was able to do my infusion in just three hours. My next round will be in late February next year and those infusions should be done in two hours.
It’s been interesting switching to a biologic. I am taking it to treat another autoimmune disease I was diagnosed with recently-the fact that it also works for NMO is just a bonus. For the first time in nine years, I am not constantly taking a handful of pills or giving myself a daily injection. I am also no longer taking prednisone, aside from the 50 mg pulse I do right before the infusions. It’s really hard to wrap my head around this. Weirdly, I feel like I should be doing more. I am really hoping that this biologic works for both diseases and I can finally feel better. As I mentioned in my previous post, it’s been a really rough summer-I have been the sickest I’ve ever been and it’s been pretty scary.
So far, I have the fatigue for a few days after the infusions. I’ve lost my appetite-I am only picking at meals. I am still in a considerable amount of pain which right now is my biggest concern. I was told it can take a month or more to see the benefits of the Rituxan. I am hoping it kicks in soon. Meanwhile, I am working on recovering as best I can and trying to get on with my life. We are transitioning to autumn weather here on the west coast of Canada, so the cooler temps are lifting my spirits. (Autumn is my most favourite time of year.)
I hope things are good in your neck of the woods!