Rituxan Treatment and Infusion Reaction

My list of treatments for rheumatoid autoimmune reads like a list of popular, everyday commercials; Humira, Remicade, Cimzia, Orencia.  Methotrexate has been the only constant. And, go figure, it is the one that is in a severe shortage through the nation. All the other treatments, while they may have started out well, the relationship always ended with an allergic reaction or adverse effect that required me to discontinue the treatment.

Rituxan is considered the "big guns" in RAD. It took a lot of research, prayers, and talking, to get me to agree to this treatment. The side effects are pretty intense, but then the pain these last 10 days has been the worst. The pain level actually helped me make the decision. I also had a very nice Rheumatologist in Germany,  Dr.Lothar M. Kirsch, who gave me a lot of good information via twitter and his Blog - Rheumatologe. Between my own Rheum Doctor (Who is awesome ), Dr Kirsch, and a very good friend of mine, who reminded me, *Knowledge is power* (Keith-- that would be you!) I set out to research what I could about Rituxan. I was getting very little feedback from twitter and my other RA support sources. My research helped me to find several clinical studies endorsed by the American College of Rheumatology these studies were very favorable. Making my decision to treat, even easier.

I am starting to write this blog as I am sitting in the cubical awaiting the first dosing infusion of Rituxan. The nurse is confident and she was able to get my IV in with one stick (I am a hard stick). Thirty minutes prior to the infusion beginning, They have loaded me up with Tylenol, Benedryl (Orally) and 100mg of steroid (IV), to counter act any reaction I may have. I am in a hospital based setting, Sylvester at Deerfield Beach , with a nice ratio of nurses to patients, which is helping to ease my anxiety. Everyone is always so friendly here. They are constantly monitoring my vitals and keep checking on me. That alone is a comfort. The Rituxan has just started to drip in, I will be here for 5 hours. So far, I am feeling a little drowsy from the benedryl, but otherwise unremarkable. (My blog writing is is discontinued here, as I begin to have a reaction.)

(I resume writing this blog the following day)---  back to the infusion--I started to feel "tired", and I put my IPad away, maybe it was time for a snooze? I then started to feel an intense itching in my throat, the kind of itching I get when I am about to have a full blown "pollen" reaction. Then, congestion, my ears fill up, vertigo, sweating, and a constant clearing of my throat. I called the nurse over. She immediately stopped the Rituxan and called the Physician Assistant who is on the floor. They checked my vitals (I had a BP cuff on that had been automatically taking my BP) and they ordered up my benedryl in the IV stat. I was next to the pharmacy, so it got to me within seconds. The benedryl was adminstered, my doctor was called. The nurse explained very clearly everything that was going on and answered all of my questions. She explained that we had started the drip at 50ml, increasing it by 50ml every 30 minutes, until it reaches 400ml. Since I had a reaction, we had to drop the drip dose back again to 50ml and wean back up again. However, we could not start again, until my reaction went away. The nurse jokingly said, "You and I might be having dinner tonight!" The benedryl started to really kick in, the symptoms were gone, we started the dosing again. 50ml, 100ml, 150ml, .... oh oh... here comes 200ml. At 200 ml, I was admittedly a little nervous and I start to feel congestion. I decide to chalk it up to anxiety, I meditate, practice some mindfulness, and the 'feeling" goes away. In the meantime, my nurse is constantly checking on me. 250ml.... I am fine and so on it continues... in the last 15 minutes of the now 8 hour infusion... I hit the 400ml dosing!We finished the bag!

I got home, and I was almost giddy... that I had made it through the infusion! I emailed my awesome Rheum Doctor, and asked her if we could start with benedryl in the IV rather then orally for the next infusion in 2 weeks. She readily agrees. That is what I love about my Rheum team... it is truly a team. We have a game plan, all of the member's input was acknowledged and taken in to account. I have absolutely no fear of my next infusion. I know what to expect, I know I will be monitored. I will also be the self advocating patient and will alert the nurse as to my "quirks"  of the last infusion. (Unfortunately, my nurse of yesterday is moving to another location....or I would request her!)

Today- one day after the infusion, I am feeling good. I actually went to a favorite wild life refuge and took some pictures with my new lens I have received for my birthday.

 I was just sitting on a bench, "waiting" for the wild life, and this great Egret, in full breeding plumage came along and demonstrated his skills at finding a snack....of Sushi, as you can plainly see!

 

I fall back, to my favorite verse....

Philippians 4:13  I can do all things through Him who strengthens me.

Blessings....... Kim