I feel like I'm starting in the middle of the story. Later I'll go back and fill you in on my history with SLE. At the moment, I feel compelled to start this particular blog because of the monumental step I am taking to feel better. Hopefully I will be conscientious about keeping track of my journey here.
On Monday, March 12th I received my first infusion of Benlysta in my doctor's office. The appointment was at 1 pm. The infusion area of my doctor's office consists of a narrow room with 5 recliners, 5 rolling IV poles and one very busy RN. Before we could start the meds, I had to be weighed - a necessary evil because the amount of Benlysta one is given depends on body weight. My vitals were taken as well - blood pressure - 135/85 and temp - 97.8. (Notice I didn't say how much I weigh!) Baseline vitals are necessary in case you start having a reaction to the meds. I was given pre-medication of Tylenol and Benadryl just in case I might have an allergic reaction - Tylenol for fever and Benadryl for itching, swelling or rashes.
Since the ratio of patient to nurse was 5 to 1, it took awhile for her to start my IV and get the meds dripping. Apparently, Benlysta is kept refrigerated until it's time to mix it with the saline. Then it has to be at room temperature or it will clump. Once the IV was finally dripping, it only took an hour for the infusion. During the treatment, the only side effects that I experienced were drowsiness from the Benadryl, coldness in the infusion arm and mild nausea. My vitals were taken again to see if I had a fever - I did not.
Later that evening, I continued to experience nausea and some chills. Not knowing how I would feel the next day, I called my boss and we agreed that I should stay home. The day after the infusion, I still had nausea, dizziness and a slight headache. Not much appetite, either. The following day, I went back to work despite the nagging nausea that seemed to come in waves. One minute I would be ok, the next I would feel green and woozy. The nausea kept coming in waves up until Thursday evening. Friday morning I was back to normal.
Here are some quick impressions I have from the experience so far -
I took a backpack loaded with a small pillow, my laptop, a book, magazines and a journal. This was way too much. The nurse had a pillow for me. I type with 2 hands so I wasn't able to use my laptop - had to keep my IV arm straight. Next time I will take my journal and a magazine. The hour went by pretty quickly once the IV was started.
It's no fun being nauseated and dizzy, but I'm hoping that as my body adjusts, this will diminish. Besides, it's much less than the lupus symptoms I deal with every day, right? My next infusion is on Monday, March 26th.
