Chronically Joyful

If you read It’s all in the Prep, then you know I prepped for this infusion. Despite how much we can plan and prepare, life is full of the unexpected – both good and bad. I would rate this experience predominantly as a good experience, but there were some obstacles along the way. 

First, my husband volunteered to take a day off of work to drive me since we didn’t know if the Benadryl would be administered orally or via IV. As we pulled into the parking lot of the infusion center, I received a phone call…from the infusion center. They’d run out of my medication and I needed to reschedule for a different day (yes, apparently that can happen). 45 minutes back home we went and a precious day off was wasted for Doug. Thankfully, I was rescheduled for 2 days later; this time I elected to drive myself just in case. 

On the day of my newly scheduled appointment, upon arrival I was delighted to discover that I had a window seat! The view wasn’t spectacular, but it was a really beautiful day in the center of Richmond, so there was a lot to see. I was prepared with a new book, plenty of water, my trusty 2007 iPod, and peanut M&Ms (or so I thought, I broke into those the day before and when I wanted them, remembered they were sitting on my desk back home). 

I’d read so many mixed things online about how the pre-medication was administered before the Ocrevus, so I expected everything to be via my IV. Turned out I was given oral Benadryl and Tylenol, and a quick hit of Solu Medrol into the IV (so not the longer experience I was used to). Small blessing? My sleep wasn’t negatively impacted by the steroids at all this time around, and for that, I am grateful! I spent my time either reading or napping in the chair, and given that my circumstances were forced, I had no choice but to relax; I always joke that we’re human “beings” and not human “doings” because I put pressure on myself to constantly remain busy. 

I wasn’t excited about the location of this infusion simply for the fact that it’s downtown where it’s impossibly challenging to park, the building is 17 stories tall with 3 different elevator systems and the staff is rarely kind. While all of these fears proved valid, my nurse, Kelly, was an absolute delight that made this experience seamless. 

The Process

I made sure to drink plenty of water and have a bigger breakfast that morning (limiting myself to just one cup of coffee instead of my usual two) to inspire my veins not to be difficult. It mostly worked, but not well enough. 

Normally, nurses prefer to stick me in the crook of my arm, and always miss, and it’s always horrendously painful. Kelly opted for the wrist instead, and as practiced as she was, accidentally stuck a valve instead of a vein – that blew instantly when she tried to fish for the vein. Her calm demeanor was helpful as I swallowed back a small amount of vomit and instantly soaked through my shirt from nervous sweat. Stick 2 successfully hit the vein, but fairly soon after, that blew too. You often hear patients beg not to be stuck in the hands, but my case was the opposite – when the hand is juicy, the hand it is. We were officially in business. 

Once I was prepped and ready, I was given the oral benadryl and oral tylenol while the pharmacy prepped the Ocrevus. Since I take a Zyrtec-D virtually every day, I was pleasantly surprised to find myself drowsing in the chair as I waited. Kelly returned and did a quick syringe of Solu Medrol into the IV and took my blood pressure for the first of many, many times. Soon after that, the Ocrevus baggy was ready for me – in 3 hours, this would be over. 

This experience was predominantly not bothersome, but I did experience a minor infusion reaction. Really, it just felt like I spent too much time outside in the spring without ever taking a Zyrtec; my throat was slightly itchy and uncomfortable, I had the constant urge to sneeze, and I just felt incredibly itchy. Having been on a medication like Tecfidera, this side effect was absolutely something I could manage. The only downside was that I needed to pause on upping the dose; slowly, they will administer more and more of the Ocrevus to ensure that the patient doesn’t have a severe reaction. By the second time we were increasing, I had to wait to monitor my condition because the reaction never stopped; it didn’t stop until it was over (and maybe even then). 

I’m naturally uncoordinated on my own, but add an IV drip and a very small bladder and you’ve got yourself a minor disaster. Things you don’t think about in normal life: how challenging it is to wash your hands adequately when there’s an IV sticking out of the top of one. I partially blame this moment of realization for the aftermath of this experience. 

Something I found interesting was that it was not required to stay for post-infusion monitoring. As soon as I was finished and my hand was free once again, I was on my merry way to get completely lost in the 17 story parking garage. 

The Aftermath 

After leaving the infusion center, I got completely lost, rode the wrong elevator up and down the same floors for too long, responded to someone who wasn’t talking to me, and immediately felt like my brain was broken. My bloody wrist from the blown valve had instantly begun to bruise and I felt like I was coming down from taking an Oxycodon. When I finally managed to make it back to my car in one piece, I just looked at myself in the rearview mirror and said 

“Well, that was weird.”

When I finally made it home, my brain still felt like it had gone fishin’. By this point, both my right wrist and left hand had bruised tremendously (and still are as I write this a week later) and I just didn’t feel quite right. I couldn’t exactly pin down what didn’t feel right, so it was something I was willing to work with when compared to other times (I’m looking at you, Diplopia). But very quickly, it became apparent what the problem was. 

The #1 side effect of Ocrevus is that it makes you incredibly susceptible to infections as it is actively working to demolish your immune system. I was told I could experience flu-like symptoms, but likely wouldn’t get sick. Clearly, those people have never met me – I ended up developing a sinus infection by the next morning, and it completely took me out of commission for 5 days. I never ran a fever, but sneezed relentlessly, almost died in my sleep from how heavily congested I was, and was just overall gross LOL. There was a brief period of time where my right thumb went completely numb from the wrist to the tip and my legs barely worked, but I think I’d take those symptoms over waking up every 5 minutes to hack up a lung. 

Now a week later, I’m 99% back to normal. I still can’t wear bracelets from the painful bruising and can’t laugh without coughing, but I’m feeling even more prepared to receive the second half of this first dose. I’m scheduled for next Friday, so my main goal right now is to stay 100% healthy as I would need to reschedule if I’m sick (and I’m not trying to do that again), and still highly susceptible to developing an infection. 

Overall, I’d give this experience a 7/10 and am optimistic for the results of this treatment! Cheers to the next one, and may everyone stay healthy (and joyful) in the meantime. 🙂