Lovely nurse (I'm the 96th patient she currently treats with Ocrevus), lovely private room, but the rest of the day was hell. I wasn't expecting the needle to go in at my wrist, so that hurt. They started me off with Benadryl, aspirin, and an IV bag of something else to prevent reactions. They didn't work.
I was fine the first hour. Within 15 minutes of upping the Ocrevus dosage, I'd developed rashes all over my face, my throat was closing, left arm kept spasming, I had an instant UTI, as well as the itching in the ears. The nurse took one look at me, shut down the Ocrevus, and called the doctor. They gave me a double dose of IV Benadryl and the other IV drug, and within seconds I was fine.
The whole process only took 4 hours, and that included the hour at the end to monitor me. By that point, I was pacing the floor. I discovered that I'm one of those strange people who gets incredibly high from industrial-strength Benadryl, so I was bouncing off the walls until 2:30 this morning. That was even after my son took me shopping for several hours so I could burn off some of the energy!
Today I'm just very tired, presumably from lack of sleep, although my left arm keeps spasming and my right leg is going out from under me (which is normal when I'm too tired).
What I'm wondering is if my reaction to the Ocrevus could turn into anaphylaxis next time? From everything I've read, no one's had that severe a reaction. My neuro wants to see me before I get the second half, but my understanding from the nurse is that he's never cancelled it for a patient. I'm willing to try it again, but I do hope it's a happier occasion!
I was fine the first hour. Within 15 minutes of upping the Ocrevus dosage, I'd developed rashes all over my face, my throat was closing, left arm kept spasming, I had an instant UTI, as well as the itching in the ears. The nurse took one look at me, shut down the Ocrevus, and called the doctor. They gave me a double dose of IV Benadryl and the other IV drug, and within seconds I was fine.
The whole process only took 4 hours, and that included the hour at the end to monitor me. By that point, I was pacing the floor. I discovered that I'm one of those strange people who gets incredibly high from industrial-strength Benadryl, so I was bouncing off the walls until 2:30 this morning. That was even after my son took me shopping for several hours so I could burn off some of the energy!
Today I'm just very tired, presumably from lack of sleep, although my left arm keeps spasming and my right leg is going out from under me (which is normal when I'm too tired).
What I'm wondering is if my reaction to the Ocrevus could turn into anaphylaxis next time? From everything I've read, no one's had that severe a reaction. My neuro wants to see me before I get the second half, but my understanding from the nurse is that he's never cancelled it for a patient. I'm willing to try it again, but I do hope it's a happier occasion!
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