My Experience with Rituximab
Last updated: August 2023
I received a letter in the mail stating I was approved for Rituximab for NMO and the date I was to receive my first dose. It was in January, and my first infusion would be split in half, two weeks apart.
Rituximab and NMO
Rituximab is given every six months and is used to reduce the number of B cells as they can cause unnecessary inflammation. It is a type of chemotherapy, and has several side effects, some of which include skin issues and hair loss.
I knew I needed this, but the side effects?
I really didn’t want to lose my hair. I'd already lost a lot due to being on a high dose of steroids for a long period of time. I also had long covid in 2020, which caused a lot of hair loss. At the same time, I knew this treatment could save me from further damage and relapses, and I could finally get off steroids. It was a bitter-sweet situation.
My first Rituximab treatment
The appointment was at 9 am and I was given my own room. They took a urine sample and put an IV tube in my arm. It took a good while to find a vein, so the infusion started later than expected, at around 11 am. I was so nervous that I hadn’t slept the night before, so I was already tired. I wanted to sleep during the infusion but the nurses had to check my blood pressure and heart rate every half an hour, so it was impossible to get in a nap.
The preventative measures didn't work
They first put me on a steroid drip to prevent any allergic reactions along with chlorphenamine and started the infusion at a slow rate. Unfortunately, these precautions didn’t prevent reactions for me. My throat became itchy and my nose was runny. I was at the hospital for 12 hours when I was originally supposed to be there for 4.
I was there much longer than I thought I would be
Even though I was at the hospital for longer than expected, I didn’t mind. I had my laptop and snacks and the nurses were so sweet and kind and, eventually, my sister came to keep me company. I finally finished around 8pm but I had to stay an hour afterwards to ensure I had no other reactions to the infusion. I was also grateful that I was able to get this treatment as a lot of people have dealt with medical professionals that dismiss their symptoms or do not put them on the right preventative treatment.
The side effects weren't terrible
After my first dose, I had a slight headache the day after. It was nothing major, and I did feel a bit down, but steroids are known to cause mood issues. My second dose went better. I had no allergic reactions and I was out on time. The day after I did have some itching sensations.
Now that I've received both doses, I am now off steroids. It has only been 10 days, so I can’t speak on how effective Rituximab has been for me as a preventative treatment. I am hoping it works as I never want to go back on steroids again, and I never want to experience the pain I felt during my first attack.
Have you been treated with Rituximab? Tell us what your experience was like in the comments
Typically, how much time passes between attacks for you?