Ocrevus For the Win-Infusion Recap
This month, I had my first Ocrevus infusion, had a birthday, and got my second infusion. Now I’ve had my loading doses, I’m good for six months before I go spend another day at the infusion clinic Suck it, B cells.
The highlights:
The pharmacist who prepared the infusions checked in afterwards to see how I was and said I take it like a champ. I guess I didn’t get the ‘very common’ side effects. Sometimes more information isn’t better, so I didn’t ask for more details. The worst thing that happens is I get really dopey thanks to the 50mg of Benadryl that’s part of the pre-medication bundle when I arrive at the infusion clinic.
There’s nothing wrong with a sedated Stephani.
During the first infusion I got a weird, dry feeling in my throat for several minutes, which I guess is pretty common. My nurse paused the infusion for a little while, and it went away without any other intervention. Second infusion, I brought mint lifesavers to see if sucking on something would help, and I had no throat issues. I’m not sure if it was the candy or not, but minty fresh breath never hurt anyone.
Both infusions, I had to get up to pee three times because you get about a litre and a half of fluid during the infusion.
The good news is, I live well-hydrated and my kidneys work splendidly.
I had a brutal headache the evening after my first infusion that lasted all of fifteen minutes, like some giant palmed my head and was giving it a good squeeze.
The evening after the second Ocrevus infusion I had some waves of headache that lasted only a few minutes at a time and nothing as intense as the first one. I hate cold things touching me but an icy gel pack on my forehead helped, both times.
They split the dose in half the first time and give them two weeks apart, but from here on out I’ll get the full dose in one sitting, every six months.
I feel like a million bucks the day after the infusions. My energy is great and I have no deficits or issues walking, but the second day after infusion I’m incredibly tired and sleep most of the day. Then I rebound and I’m back to feeling good, but not as good as the very day after. Along with the Benadryl, I get a good dose of a corticosteroid before we start the Ocrevus. I wonder if it’s the anti-inflammatory effects that make me feel like my normal (pre-MS) self again.
I’ll add it to the list of things to ask the neurologist next appointment.
Starting the Ocrevus has been really beneficial to my overall mental health. I’m sleeping much better at night, because the fear of how I’ll wake up that I’ve talked about before is really diminished. My disease progression is slowed and if I stay at my current level of disability, I think I can live with it. (If I get some improvement, I’m definitely okay with that. I’m trying to be optimistic without getting my hopes up.)
Because I struggle with ‘worst case scenario’ anxiety, I wondered very briefly if the reason I tolerate the infusions easily so far, is that my immune system is so aggressive it doesn’t care about or react to the Ocrevus.
I refuse to dwell on that though. This medication is highly effective for many, and I won’t know until my next MRI (probably next summer) if it prevented further lesions and slowed disease progression. There’s no point in spending 8 months stressing about it. I’ve done everything in my power that I can do, and now I go about my life until the next MRI.
