Last Thursday was my first infusion with Ocrevus, and the truth is, I am so thankful I made the change in switching to this drug. It wasn’t flawless, but much better than I expected, and I haven’t given myself a shot for 9 days….that is the longest I have gone without injecting myself in 4 years! Actually, triple the longest I have gone. HA!
So for those of you who are interested, here is the break down of the entire experience, the good, the scary, and the boring. (it as mostly boring)
My arrival time was 10am. I was so anxious from Wednesday night until I arrived at the infusion center, so I had been crying and frustrated and I was just ready to do it. Now I see it was totally irrational, but hey, I am only human.
I was taken to the infusion room about 10:10, and it was my lucky day, I was the only patient for that day! I got the entire room to myself! My nurse, Karen, was such a great nurse, and totally my kind of person. We laughed at the same things, she cracked jokes that I could hear coming out of my own mouth, and I just instantly felt at ease with her. I knew my boyfriend was not going to be there until closer to 11, so I was glad to have Karen with me. (I can’t believe at one point I thought I didn’t need a support person, and you’ll understand more later)
Karen hooked up my IV in my left forearm, because I had plans to work throughout the day and wanted the mobility. I was immediately given Benadryl pills, Tylenol, and IV steroids. Then I had to wait about 30 minutes for those things to kick in before the infusion could start. This is when we went over health history… boring…. But necessary.
Right at 10:50 is when I started the Ocrevus infusion. In the beginning, they take your temp, blood pressure, pulse and measure pulse/ox levels. I knew that my BP was high for me, but it was not “high” so I was fine to go. She hooked it all up, pushed some buttons on the infusion machine, and let me be. I watched the line anxiously waiting for the fluids to push into my body. I don’t know why, but I am sure in that moment my pulse was out of this world. I was thinking, what if this enters my body and I immediately have a heart attack? Or allergic reaction and die right away? You aren’t supposed to use Ocrevus if you are “allergic to Ocrevus or any of its ingredients” and I always wonder how you know you are allergic until you try it. Well, this was my time. It felt like it took forever to move through the line. I could tell because there was a bubble right before the Ocrevus liquid. But then it started, and I felt the exact same. Phew! What a relief.
Around 1:20 the nurse came to check on me again, and I told her I was feeling itchy. And then as I was telling her, I felt more itchy. Then I was convinced it was in my head. You know, when they send a note home about lice at school and suddenly you can’t stop thinking your head itches…. That’s what I thought was happening. She checked all those vitals, and they were all up-pulse, BP and temperature. She asked me if I felt okay otherwise, and then said “Oh my gosh. You have hives.” I looked down at my chest and had an internal panic attack. For a second I thought, “SHIT! I knew this drug was the wrong decision” and I almost started to cry. Then I remembered that if I started to cry, I probably wouldn’t be able to stop, so I just decided to not talk. Logical right? So, the infusion had to stop. She gave me IV Benadryl which made me feel pretty out of it, so no more working for the day. I closed my eyes to again try not to cry. My whole body was itching. I could tell I was broken out all over, but I didn’t want to examine myself because I didn’t want to panic more. So I just sat there, holding hands with my boyfriend, trying to breathe. (I wasn’t having a hard time breathing, it’s just something they say…)
I am not sure how long it took for that to pass. About 30 minutes I guess, based on text updates I was giving my friends and family. The crappy part is that I could not increase my rate of infusion anymore. In fact, we had to lower it some, so it just took longer than expected. I was pretty close to done by this point, but just extended a little bit. Thankfully, I was encouraged to start watching Survivor this season, and we hadn’t watched the finale, so we were able to do this to pass the time. By 2:05 I was back at it. A little lightheaded, but no big deal. Worst part was going to the bathroom. It was already annoying enough to have to drag the infusion machine with me, but now I was also just a little more uncoordinated than usual, so it was an adventure.
The last hour was pretty uneventful again. I tolerated the infusion well the rest of the time. And around 3:15 I was done. I just had to sit and wait for 30 minutes to pass to be sure that nothing else happened. Spoiler alert-nothing happened! Thank you, Lord. Actually, I take that back. The most painful part of the entire thing, getting the damn tape and sticky IV cover off my arm! There was nothing fast about it, and I could literally see the catheter wiggling around in my arm as each tiny baby hair was pulled out of my arm one my one.
The rest of the night I felt tired. I would bet I would have felt completely normal if it weren’t for the Benadryl. I wanted to nap, but I knew it was an odd time to nap, and I would rather get a good night’s sleep, which is exactly what I did.
When I woke up on Friday I was feeling, eh, okay. Weird things, but nothing really major. I was exhausted. Even after a lot of sleep. My legs were achy, like after a long run. They just felt like they didn’t want to work. And finally my stomach hurt. I have never really had indigestion, but I guess that is what was happening. I felt like a ton of air was trapped in my stomach. Occasionally I felt like I was going to be sick, and as I was getting ready for work I kept feeling lightheaded and needed to get back in bed for a few minutes. I was thankful my family kept my boys for me because I was struggling. I made it to work around 10am, and as I was walking in, I seriously thought my legs were going to give out. Damn stairs. I only worked for a few hours, just trying to knock out a few things so that Monday could be super productive. Then I required more rest. After about an hour power nap, I was feeling much better. I had to MC a private concert that night, and while I had several backups in case I couldn’t do it, I just didn’t want to miss out on the event. It was exhausting, but such a fun night. I am thankful I was able to do it.
Saturday was much better. No real issues by this point, and I am not sure if the side effects I had were from Ocrevus, Benadryl, the steroids, or stress/anxiety. I was a little swollen and really hungry for a few days, or maybe I was just mentally drained and wanted to eat. I’m not sure. I feel much more prepared for the next infusion, a week from today! I think my mom is going to join me for some of this one, and hopefully it is less eventful than the last. My nurse Karen is going to be in Hawaii, so I will miss her, but rumor is I get the suite to myself again. I am hoping that the bruise is less noticeable next time. I look like I have been shooting up drugs. Well, I guess that is exactly what I did…hmm… It will probably go away just in time for the next infusion, and another two weeks of bruising from that. Oh well. Looking forward to getting that over, and not thinking about my MS for SIX MONTHS!!!
More to come!
❤ MS Andrea Jackson
One thought on “Ocrevus Part 1”
Thank you for sharing your story with Ocrevus. I remember when i had decided to stop Gilenya and Tecfidera. The Tecfidera wasn’t strong enough and the doctor pushed Ocrevus on me. I ended up going back to Gilenya because it does work rather well. Plus when this was going on Ocrevus was still very new. I am SO happy it is working well for you and there weren’t any issues afterwards. I am really looking forward to reading more of what you share. I think this is an amazing outlet for all of us to not only learn from others, but connect with them as well. I hope if you have time you will check out my site. I do my best to spread as much positivity as I can because I do think it helps! I hope you are feeling well and have a wonderful weekend!!