On June 19th, I had my fourth dose of Rituxan (the second part of set #2). You’ll notice that I’m wearing the exact same cardigan as last time. As it turns out, this is perfect for infusions – stretchy enough that they can pull it up to run and IV and thin enough to take a BP without removing it. All the same, it tends to keep me warm. It has officially become my Infusion Outfit. Ah, the things that make me happy now! I’ve taken to bringing my own blanket as well, but they like to put a warm blanket on top of that so in the pic above I have two blankets plus a pillow for my arm. Comfy indeed.
It was good news all around: not only did the infusion go off without a hitch, but I am pleased to share that we actually increased the infusion rate and I tolerated it well! I was nervous about this step because of my reaction the first time, but I did just fine. The hardest part was the difficulty in finding a vein. It doesn’t seem to matter how much water I drink, this always happens. I’m used to it, so it wasn’t a surprise, but the vein search took about 30 minutes. Even with that delay, we were out of the infusion center in 5.5 hours! Remarkable when compared with the 8.5+ hours of my first visit.
The IV benedryl really did me in this time. Shortly after receiving it, I zoned out completely. W said he was messing with my toes and I didn’t react. I remember very little during this time except that he shook me gently once to tell me I was snoring.
Every time I have an infusion I still have a panicky moment on the way there when I ask myself (and W too) why I am allowing/encouraging people to pump me full of scary drugs. Looking forward to it even? W sighs and slowly reminds me again that the risks of not taking the drug greatly outweigh the risks of using it. I want to be relapse free. I want to keep walking. I want to keep the daily impact of my MS as minimal as possible. So, I get the infusion and after recovering a bit, I move forward with life.
I came home from this infusion and slept for twelve hours, was up for four, and then back to sleep again for four. I returned to my regular seven hours of sleep that night. Basically I slept 25 of 29 hours. That is an official record for me. I woke up so sick of being in bed that I insisted that W take me to the local farmer’s market just so that I could get up and walk around a bit. Three days post infusion I am still very tired, but can feel myself heading back to normal again.
Some of the best news came from the NP before I headed to the infusion center. She mentioned (again) that I may be able to switch to one infusion go around instead of the set of two. Woohoo! I am seeing the MS Specialist in three months and she will confirm the treatment plan then, but it is a potentially positive thought to keep me going.
I have Ritiximab for Rheumatoid Arthritis treatment and it suits me perfectly. It sounds like it is also doing a good job in treating your illness. 🙂 I hope you continue to feel the benefits of this treatment.
Thank you for your kind words! I am grateful for the Rituxan and very glad to hear it is working for you as well. May I ask how long you’ve been on it? I’m not seeing my MS Specialist again until Sept, but am curious how long folks can stay on the med continuously.
I had my fourth course around 3 weeks ago, I was really lucky my first dose of it put my ra in remission and I had 2 years of no treatment but I’m now in once a year for it. My rheumatologist said she is happy for me to continue with it until it starts to show signs of having a negative effect on my immune system. I’m hoping to be on it for a few years yet, its given me back my life and I don’t want to have to spend years finding another treatment that works in the same way.
Good to know – thanks for the response!