Adventures in Ocrevus

Yesterday I had my first infusion of an official MS medication, Ocrevus. This treatment is new to the market, having just cleared FDA approval at the end of March 2017. Fortunately it is not new to my neurologist, who had been using it in patients for a few years through clinical trials (this is one reason it's helpful to go to a large academic medical center for treatment if at all possible). My husband was on campus teaching, so my Dad drove me there and he joined us a bit later.

The process was pretty straightforward. Everything took place in the very busy outpatient infusion center at the hospital, and was managed by an infusion RN who started with a set of standard health questions. When she got to "Have you had any tingling, numbness, or dizziness?" I laughed and said "Well, yes. I do have MS." She cracked a smile for the first time at that.

I know they were short-staffed yesterday, but I still received the care I needed. During the process I saw my RN, a tech, and a pharmacist. The pharmacist brought up the Ocrevus itself, wrapped in amber plastic to shield it from light. Realizing I'd never been in the room with a plastic bag of liquid worth tens of thousands of dollars, I photographed it for posterity.

This bag is worth more than the sticker price of my graduate degree.

The "pre-meds" consisted of two Tylenol, 2 tabs of Benadryl, and 100 mg of Solumedrol shot into my IV. Benadryl makes me sleepy and steroids give me a rush, so that was fun. I had some weird waking half-dreams over the next few hours.

The protocol for Ocrevus calls for the drip to be started slowly, then turned up every half hour. The first two adjustments were fine, but I felt some itching in my throat after the next one. That caused the nurse to turn off the drip completely for 30 minutes. We then started back at a slower pace, but went back to turning up the speed every 30 minutes with no more problems for the rest of the infusion.

When they resumed the drip, the tech dropped off two little packets in my room. I asked my Dad what they were, and he said he couldn't tell. Later I was able to look, and saw that they were labeled "anaphylaxis kit." I know darn well he knows what that means, so I assume he didn't want to alarm me. Well played, Dad. It was probably for the best at that point, as my blood pressure and pulse monitor showed I was getting a bit stressed out.

During the times that I wasn't in a loopy half-dreaming state I listened to an audiobook, knit a few rows (not easy with the IV in), ate the delicious hummus my husband brought from the hospital cafeteria,  and watched some trashy reality TV.

Finally the IV machine made the sweet beeping sound that meant the bag was empty. The nurse unplugged it, flushed the line to push the last of the Ocrevus into my veins, and took my blood pressure one more time (it had dropped back to normal). After the mandatory waiting period the IV came out and I was done.

I went to bed a little early, and am having a low-key day. Sometimes I feel completely normal, and sometimes I have some flushing and fatigue. I'm also hella hungry. Considering my B-cells are now dying at the hands of humanized antibodies, I feel okay-ish. If this is as bad as it gets, I can live with it. 

PS: For some reason I picture the B-cell war in my bloodstream like this:

Artist cred: Sprucehammer on DeviantArt
I'm struggling to come up with an apt metaphor involving Gauls, Roman phalanxes, and my immune system, but failing right now thanks to steroid brain. So I leave you with this question: Is there anywhere online that I can stream old Asterix the Gaul cartoons?


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