Planning and preparation are key for my biannual Ocrevus infusions

I’d spent about five years trying to figure out what was wrong with me and then treat it when I got the phone call. During that time, I’d had three surgeries to repair old injuries and had been treated for chronic Q fever. I’d also been diagnosed with multiple sclerosis (MS).

I was initially given a disease-modifying therapy (DMT) for relapsing-remitting MS. Then my diagnosis changed to primary progressive MS (PPMS), and I stopped treatment for about two years, until Ocrevus (ocrelizumab) became available.

It was a new drug at the time, and the infusion center at my neurologist’s office wasn’t able to administer it yet. The team promised to find me an infusion center.

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I was at work when my phone rang. The voice on the other end said they were calling from a cancer center.

“Oh, what fresh hell is this?” I wondered aloud. I wasn’t exactly thrilled to hear the word “cancer.” The caller put two and two together and quickly clarified, “Oh, no, your neurologist contacted us, and we’ll be starting your Ocrevus infusions.”

I breathed a sigh of relief, then said, “That’s great news, but maybe you should lead with that next time!”

I’ll soon be receiving my 17th infusion, and although the process today is a bit more streamlined than it was back then, it’s still an ordeal.

17th time’s a charm

“Ordeal” probably isn’t the right word, but even if it is, it’s all relative. I’m extremely grateful that a DMT is available for PPMS. I’m thankful that it appears to have halted my disease activity for now. I’m also happy I have to take this medication only twice a year, via IV infusion.

A better way to describe the process, which always occurs on a Friday in late April or October, is probably “time-consuming,” because it requires planning and preparation. So let me walk you through my infusion process.

I start preparing about a week before an infusion by making sure my pre-infusion lab work — which is only a hepatitis B test — is scheduled. Going to the lab and waiting for results can take about an hour, so I like to do it the day before the infusion.

I can’t drive, so my wife is always involved in the planning. She drives me to the infusion center, about an hour away, and picks me up when I’m done. The entire procedure, including an hour of observation when it’s over, takes about four hours.

I like to bring a blanket and a book. My wheelchair reclines, so I don’t need to transfer to a chair, but I do have trouble going to the restroom.

An IV is started, which I prefer to be inserted in the back of my right hand. It’s my least usable limb and stays relatively still for the procedure. I don’t mind needles, and after spending years as an Army medic, plus having all of these infusions, I can point out where my best veins are. Unfortunately, though, when I’m fatigued, my hands get cold and my veins disappear, so placing the IV where I want it can sometimes be challenging.

Once that’s done, we start the pre-medication phase, which consists of IV steroids and oral diphenhydramine and acetaminophen. (After 16 infusions, I wonder if I even need those anymore. Better safe than sorry, I suppose.)

This is followed by the infusion, which lasts about three hours and actually feels like the easiest part of the procedure. The worst part of the entire process is having the tape pulled off my arm when the IV is removed.

Next is an hour of observation. And the last part is checking out, scheduling the next infusion, and driving home. I’m actually looking forward to that last part, because we usually get something to eat, and I’m going to try to convince my wife to let me cheat on my diet. We’ll see how that goes!

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.