Infusion time! Let the ocrevus flow..

Today is my Ocrevus infusion. I have planned for this in advance, and I know that I am pretty much going to be out of commission for the beginning of the day. I will never get to the gym later, and there is no way that I am going to miss my 8:30 AM appointment. I’m going to get up even earlier today and hit the gym at 4:30 AM. Like any other day is the best way for me to start, being as active as I can, as the rest of my day makes it very hard to find the energy, but to actually get myself there.

I’ve been getting Ocrevus now for five years. I have never had a reaction and I have not had any new lesions on my spinal cord or brain, since I’ve been on this medication, switching from Tecfidera.

I am completely grateful to be on this medication, the only one approved for treatment of primary progressive MS, which is what I have. From my last treatment. I was at a different Infusion Center, and was not happy with the treatment I got. They were very rude to me and I felt like deserved better. The nurse at my doctors office arranged everything for me to be at this other infusion center not too far away, in a smaller location. I was happy to accept the offer, and it went without a hitch.
At this infusion center there was a Doctor Who oversaw all of the patient’s cases, coming into check on us every so often. He had an excellent bedside manner.

One thing I really loved about this location is that the bathroom was right in front of me. I chose one of the seven infusion chairs to be closest to it. When your drugged up on Benadryl preparing for the actual Ocrevus infusion It’s tough enough to walk with no IV pole, but when you have an IV pole, that you have to dance around to get to the bathroom, it’s a little cumbersome. I was thankful to have the bathroom a straight distance from me about 15 feet away. It’s always been around the corner or down the hall. That’s one thing to think about when you look for an infusion center.

For some reason, I am always a few minutes late to my appointment. That is when I get to them on the correct day. I have shown up before four doctors appointments on the wrong day like a few days before, but I have to do a little extra planning on getting there. Especially with traffic because I take some major highway sometimes to get to the appointment. Google maps does a nice traffic review from the satellite to let you know how much longer your trip is going to be. This is helpful to look at before actually leaving, but always give yourself a good time. It never fails, I’m always a few late.

because I had my ankle surgery last year I’m trying to walk more. I’m not so reliant on my motorized scooter anymore in my trunk, so I was OK with walking to the door. Then when I saw how far it was from the door to the elevator, then upstairs, and down the hall to the bathroom, I wish I had brought it. For some reason later on, I really didn’t need it when I left, maybe because I had a little extra pep in my step, because I had an abbreviated or shortened infusion time, and was happy to get out of there. But it’s some thing that I have to plan on for next time and not be so gung ho about it.

At the other infusion center, they readily gave me snacks without even having to ask, and asked me if I wanted a meal for lunchtime. At this location, I saw that they were snacks on my way out, but nobody really offered me anything during my stay there. It’s something that would’ve been nice, but I guess I could’ve just asked. Probably because the Benadryl was drugging me up, even if I go to say something everything is slurred. that’s the part that I hate most. If there’s anything I hate, being drugged up. I guess it’s better than getting a reaction, but I’ve never done drugs, and I don’t like the feeling of not being in control. Especially of my speech and my vision. So next time I will prepare to ask for snacks in the beginning, and ask if there’s going to be a meal. There was no water, snack or meal. Next time I’ll ask first.

I was also surprised when I got my pills, which was a Tylenol, and a Claritin, before I was hooked up. Maybe because I had a water bottle next to me? It was my own thermos, but you would think that I would get a water to take a pill. It’s not a big deal, just something to think about.

Also, something to think about is if you are given a blanket for your infusion. It makes you feel kind of comfortable with your legs elevated in a recliner, covered with a blanket. Only thing was she threw a warm blanket on me. I do not like heat. It makes me weak. It makes a lot of people with MS feel weak. So she took it off immediately and gave me a cool one. It’s just something to think about before. anybody puts a blanket on you. Make sure it’s at the temperature that’s comfortable for you!

Last thing I have to say about the infusion was that it makes me very happy to know that I can have an abbreviated time at the infusion center with an accelerated drip time. I think it’s about half the time. Still that’s time that I couldn’t get back if I wanted to. I’m still there about 45 minutes after the infusion to wait to see if there’s any reaction. Some places make you wait for an hour. I like the 45 minutes better.

But after the third Ocrevus infusion I got four years ago, I was a pro. No migraines, and I think the trick is making sure that I am hydrated before. I’m going to hydrate after because I plan on going to the gym tomorrow a.m. I feel pretty amazing. Only thing different is that I have a blue elastic wrap around my arm where the pick line was for the IV. Other than that you would never know where I was today. Unless you look on my Instagram that is. 🙂