The decision to start Rituxan was fraught with worry. I know it was recommended by the MS Specialist and she had both MS and NMO patients on it that were doing well. She even offered us several stories of folks who were more mobile post Rituxan then before. On top of that, she took the time to explain the mechanism in a way that I would understand. All the same, I was concerned.
For those who are not familiar, Rituxan (Rituximab) is not FDA approved for MS (and likely will not be). It is a monoclonal antibody that destroys B cells, a very specific cell that is a part of the immune system. Although used for certain cancer treatments, it isn’t a standard chemotherapy agent and is used to treat several auto-immune disorders including Rheumatoid Arthritis. Progressive Multifocal Leukoencephalopathy is still a risk (and a frightening one) but those who are familiar with MS medications know that risk exists with other MS meds and the risk with Rituxan is much lower.
My dad, who is a family doc, my mom, my husband and I all attended the appointment to discuss the medication choice. We all left with a positive feeling, but I received a call later that evening from my father saying that he didn’t want to influence my decision, but thought it would be good to research the medication choice a bit more. As it turns out, he had pulled it up on Epocrates and read all the warnings – enough to scare anyone. Thankfully as a doc, he has access to other physicians and was able to speak to someone who administers the medication routinely in their office. He was assured based on their conversation that they rarely saw the complications that were of concern – those were mostly seen with folks on other chemotherapy medications. So, we made the decision to proceed.
Within two weeks of my discussion with the MS specialist about the medication, my husband and I found ourselves on the way to the infusion center for my first Rituxan infusion. In spite of all the discussion, I was immensely nervous and my blood pressure was very high.
I went back initially without my husband so they could get me set up. I got comfy in a chair, they wrapped my arm in a heated blanket (to help start an IV) and talked to me a bit about what was going to happen. Vitals were taken, an IV started, and then my hubby was ushered in to sit with me.
They started by giving me Tylenol to take, then started infusing a steroid. Once that was done, they gave me Benedryl IV. I am incredibly sensitive to Benedryl and had to fight hard to stay awake, but at least I was more calm. The nurses started Rituxan at a very low infusion rate and slowly increase it in stages, taking vitals at set intervals, and checking up on me frequently. I dozed in and out for a while and then noticed – right around 150 – that my scalp was slightly itchy. Then my ear started to itch, and then the right side of my face. I asked Wayne to get a nurse and they came over and stopped the infusion. At this point I was feeling hot and flushed. We waited a few minutes to see if it would calm on it’s own, but the decision was made to give me more Benedryl and another steroid infusion. We waited 30 minutes for the flushed and itchy feeling to subside, then restarted the infusion again at the lower level. An infusion that should have taken 6 hours or so kept us (and the poor staff!) there for a total of 10 hours. We were literally the last people in the building. 🙂
I was a bit nervous about the 2nd infusion based on the first experience, but the nursing staff explained to me that I likely experienced mild cytokine release syndrome and it is fairly common. It meant the medication was doing its job and it likely would not happen again. Sure enough, the 2nd infusion was much easier. My mom was with me this time to keep me company and we were in and out in 6 hours with no need for additional mid infusion meds (just the typical pre-treatment Tylenol, Benedryl, and steroid).
After both infusions I was told that I could return to normal duties, but that didn’t happen for me. In both cases it took me two full days post infusion of sleep to feel like a normal person again. My body just felt worn out. After those two days, my energy level started to return and was better than before the infusion.
The good news came a few weeks later when I received my lab results and my CD20 counts were zero! The tentative plan is to re-treat again in six months to keep those levels at zero.