It is now almost one month since I went in for my first infusion of Rituxan. Thinking back - that day was quite the adventure. You can read about the experience in Rituximab Infusion for RA: My First Experience, an article in which I also present a lot of information about Rituximab (Rituxan ®).
The 2nd Infusion Experience
During my first infusion, I experienced cytokine-release syndrome, also known as an acute infusion reaction. It was very much unpleasant and still makes me feel itchy and swollen if I think about it (not physically, but just through the memories). Since I had been in that estimated 10% of patients who had such a prolonged reaction as to need medical intervention, we were very conservative and began cautiously for the 2nd infusion.
My rheumatologist wanted to see me after the 1st infusion, but I had already made plans to go away for the week of Thanksgiving. My beau and I went away as planned. When I returned, my doctor and I spoke. I told her that everything was going well. I felt good (which I’ll talk about in just a moment). She said that the hospital (ie. the nurse and doctor who were caring for me during the infusion) had called several times during that first infusion. As my doctor, Dr. Price had to make the decisions and give the orders on what to do for me while I was in the outpatient clinic section of the hospital.
So for the 2nd infusion, my rheumatologist ordered additional hydrocortisone to be ready for use if necessary. She even altered my pre-infusion treatment to include not only the dose of IV hydrocortisone but also IV benadryl this time. Wowsa! That stuff is strong going directly into the vein.
Oops, I should back up in my story. After getting an IV in place, the nurse drew blood to have my blood counts checked. We would need to wait for the results to come back before getting started. I asked for copies of the test results (which the nurse happily gave me) and everything looked fine. We were good to go!!
After the blood tests came back, then we started with the pre-medication routine which included 2 Tylenol caplets, IV benadryl, and IV hydrocortisone. It was time to order up the Rituxan from the hospital pharmacy. There was a minor glitch, however, and the pharmacy was waiting on the 2nd vial of medication to arrive. The time between pre-medication and the start of the actual treatment was lengthened considerably. This was just as well, because it allowed the pre-meds to circulate thoroughly and probably be even more effective. I was in no hurry, having planned to be in the hospital for the entire workday anyways.
Once we got the infusion started, the infusion nurse monitored me carefully. When I began to experience the most subtle itching and swelling sensation, she didn’t hesitate to see if it would progress. She administered another dose of hydrocortisone and I had the easiest of infusion experiences after that. I knew what to look for, she knew what to look for, we had planned ahead and acted accordingly.
The rest of the infusion was uneventful…except that I had my phone with me and got to meet (by phone) the two new producers who I will be working with here at MyRACentral and MultipleSclerosisCentral.
In my first post on the topic of Rituxan, I discussed the infusion-related reaction in detail. What I didn’t discuss was any benefit I might have experienced afterwards. So here’s the scoop. Only days after the first infusion, I noticed less swelling in my joints.
One specific joint which gave me a sense of "aha! I knew it!" included my right knee. I had mentioned trouble with that knee for over a year to my rheumatologist who examined it and didn’t detect any swelling. OK, I’ll fess up. I have big knees - always have. It would be very difficult to determine what is going on in that joint without using ultrasound or x-ray (which we have never done). After the infusion, my knee felt as though it were becoming "sloppy" and fluid; it is definitely looser. I began having much less pain and disability in that knee and thus in that leg. You can bet the my rheumatologist is going to be hearing about that.
My hands feel better. I can close them into fists without pain or struggle. Admittedly, they have felt a little strange, though, almost as if muscles and tendons are in slightly different places. At first my right wrist flared up a little bit, but it has been fine for the past 2 weeks.
Last week, I sat at the piano to present a new Sonatina to a piano student. It felt really good!! My hands and fingers almost felt like they used to years ago. I didn’t seem to have to think about how to direct them nearly as much as I have in recent years. I blamed this somewhat on the multiple sclerosis, but only occasionally on the RA. Whatever the cause of the fluidity and control, I was thrilled to have a moment of flight over the piano keys.
I’m excited to see where all of this will take me. Is it really possible to get "MY HANDS" back? That might not be completely possible with RA and MS, but I am now hopeful for the first time in years.
As this story develops, I’ll be sure to keep you posted. I’m already thankful for having done my own research and acted as my own advocate into trying this treatment approach. It wasn’t my rheumatologist first idea; it was mine. Sometimes we just need to learn as much as we can about different treatment approaches and then present the information to our doctors.
In my case, I wanted to know if Rituxan would be good for my MS so I talked with my MS medical professionals. Then I presented the information to my rheumatologist who wanted to talk with my neurologist. Together the three of us made this treatment decision. I’m so glad that we did.
Read the first part of this story - Rituximab Infusion for RA: My First Experience
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.