One Day, One Full Rituximab Infusion
Last updated: December 2022
I had my first complete rituximab infusion for NMO on the 26th of July, the day before my 20th birthday. Finally, after having to postpone it twice due to catching Covid and a kidney infection, I got the treatment.
A full infusion in one day
When I was first given rituximab, it was split into two infusions which were two weeks apart. The first time took around 12 hours. This time it was one full dose given in one day. I was hoping it would take less time than it did the first time. I was worried about the toll it would take on me if I would have any reactions and how long it would take altogether.
Preparing for the treatment
I made sure to drink a lot of water and eat a big breakfast before the infusion so my veins would be easier to find, and I wouldn't feel faint if I was poked multiple times. I also had a can of Red Bull for some energy.
My hospital experience
The last two times I've been to the hospital, I was given my own room. But this time, I sat in a recliner seat, and other people were in the room with me. I was then told to give a urine sample and had my blood pressure, heart rate, and temperature taken. Everything was fine. It was time to put the IV cannula in and start the infusion.
Prepare for the pokes!
It’s quite hard to find my veins in general, but this time it was different. In the past, I never really had a problem with needles, but now, I'm slowly beginning to hate the idea of being poked. I began to feel sick and faint as soon as I was poked for the second time. They have difficulty finding my veins every time I go in for blood tests or infusions, and it's just getting worse with time. The vein that the nurse found in my hand ended up gushing blood and didn’t last very long because it had tissued. The sight of blood made me feel even sicker, and my hand had started to hurt a lot and began to swell up. I was given an ice pack.
The second nurse had a try, and she finally found a vein in my right arm. The IV cannula was put in. I was given antihistamines via infusion and some Paracetamol to prevent any allergic reactions.
The infusion went smoothly
I was then given the steroids and the nurse finally started up the rituximab. The infusion went well. It took three hours in total, and I had no allergic reactions for the first time.
Afterwards, the slow onset of symptoms
As soon as the infusion finished, I felt a headache and some nausea. After a few hours, it got worse. I lost my appetite and just felt really sick - to the point where I thought I was going to vomit. I’ve also noticed the steroids that I was given before the rituximab caused some mood swings, but that only lasted a few hours. I didn't get much sleep the first night - which I think could be because of the steroids, too.
Taking time to rest and reset
It has been a few days since my infusion, and I still feel pretty worn out and drained. I've spent most of the days in bed sleeping.
Typically, how much time passes between attacks for you?