Packing For Infusion

November 28, 2024

Twice a year, I go to the city for an Ocrevus infusion to manage MS. It keeps my immune system from snacking on my brain and spinal cord. The first time was terrifying because I had no idea what to expect. What did they think might happen, given all the talk about infusion reaction, pre-medication before the infusion, etc?

I luckily tolerate the infusion well, without any issues whatsoever. I usually have tons of energy the day after (thanks, pre-medication steroid) but the next day I can’t do anything except lie around and sleep. After that, everything goes back to baseline and everything is like it was before the infusion for me.

After my first couple of infusions, I started to make myself right at home in the clinic.

At the end of this post I’ll have a list of what I take with me.

But first, here’s what to expect during your infusion and why I pack certain things.

Part of the pre-medication includes 50mg of Benadryl. 25mg is the standard dose, and I’m really sensitive to it so 25mg will knock me out every time. 50mg? It puts me to sleep for 1-3 hours and I can’t predict how long, so I’m just prepared to nap. My infusion takes about 5 hours from start to finish so napping for half of it isn’t terrible.

I need a ride to and from the clinic because I can’t drive after any amount of Benadryl. My husband drops me off and comes back in the afternoon. You can usually have someone stay with you if you need help or want company, but I’m so sedated and sleepy it would be really boring for him so I make him leave me there.

Pre-medication takes about half an hour.

The Benadryl, Solu-Medrol, and acetaminophen takes about that long to take effect. Then the actual Ocrevus infusion takes me about 4 hours. The first time or two, you stay for ongoing monitoring for an hour since you can have an infusion reaction for up to 24 hrs. After that, you can usually leave right after the infusion is done after signing some paperwork.

The nurses will come check your temperature and blood pressure at regular intervals. Honestly, I’m always heavily sedated from the Benadryl so I’m not sure how often. At least every hour, maybe 45 minutes? My first couple infusions, they checked my vital signs frequently to make sure I wasn’t having any type of reaction. Now it’s less frequent after the first hour because I’ve never had any type of reaction. The first infusion is the longest for safety, then after a couple of them without any reaction they’ll give it to you a bit faster if you tolerate it. Edited to add: My nurse today was awesome, and I asked about vital signs before the pre-meds knocked me out. She says the checks are done every half an hour. She also suggested I just leave the cuff in place while I slept so she could check it without disturbing me. Loved her, too bad I usually get a new nurse every time. They‘re all mostly good but she was exceptional.

If getting an IV causes anxiety, I promise that the clinic nurses are very good at starting them.

The IV size they use is very small.

They only carry 22 or 24 gauge IV catheters. The bigger the number, the smaller the catheter diameter. 22 and 24 are pediatric sized, or for elderly people with garbage veins. If you’re not a med pro this might mean nothing to you, but I can take a 14 gauge in the back of my hand. My veins are huge and easy, and I still get a tiny little IV.

It might help to remember the needle doesn’t stay in your hand/arm, it goes in then out. All that stays in your body is essentially a flexible plastic straw for the fluid and medication to go directly into your vein. The needle part is very quick, just to get the catheter into your vein.

The more hydrated you are, the easier it is to tolerate the infusion during and after. You have a bag of saline that runs alongside the small bag of Ocrevus, and I take my water bottle too. I have to get up and pee about once an hour, which is perfect. Hydration is so important, not only for infusion tolerance but I find my symptoms are much worse if I’m even slightly dehydrated.

Three things you should be prepared to manage during your infusion: bored, sleepy, and cold.

Cold

The infusion clinic is kept at about the same temperature as any hospital or doctor’s office, so it’s chilly. The fluids they give during the infusion aren’t warmed so they’re at room temperature, so they’re a bit chilly which makes you even chillier. There are lots of outlets by every patient recliner for plugging in the IV pumps so it’s possible to bring a heating pad if you tend to get really cold, and of course you can charge a phone or other electronics.

I take a thick, fuzzy Oodie. (A very large hoodie, if you’re unfamiliar.) It covers like a blanket so I don’t wear it. I flip it so I can put my feet into the fleece-lined hood and then use the rest as a blanket. If you don’t have an Oodie, any warm blanket will do. I like fuzzy ones myself, just because I find really soft things calming. The infusions aren’t scary anymore because I know what to expect, but there’s nothing wrong with making sure I’m as comfy and relaxed as possible because chronic illness sucks.

Your feet will likely get cold too so I bring a pair of fuzzy thermal socks to put on over my regular socks once I take my shoes off. Even for my summer infusion!

Bored

If you want to watch things on your phone or other electronics or listen to music or an audiobook, please for the love of gawd bring headphones. Nobody else wants to hear what you’re listening to, and same with phone calls. You’re not allowed to make or take calls on the clinic I go to, especially things like Face Time. Patient privacy is a thing and I’m at an age where I don’t mind making inconsiderate people feel very uncomfortable.

Also, please silence your phone so you’re not the inconsiderate jerk disturbing everyone else’s peace during infusion.

With headphones on, I’m happy to watch a movie or listen to a podcast when I’m not sleeping. I take my e-reader too, just so I have lots of options to avoid boredom when I’m not sleeping. Sometimes if I have the brain power, I’ll play Whiteout Survival on my phone for awhile.

When I first started Ocrevus, a couple of times it made my mouth really dry, despite me always drinking lots of water and getting fluids through the IV. The first time it happened at my first infusion, they slowed the infusion right down until it passed in case it was in infusion reaction. I thought it might be a response to the Benadryl, which is anticholinergic. I have a strong reaction to it, so I bring mints or hard candies to have the first hour or so. It seems to have solved the problem.

Sleepy

Infusion clinics haven recliners. Put your travel pillow around your neck, put your chair back, cover up with a fuzzy warm blankie, and have a nap. Edited to add: today my infusion nap was just over 2.5 hrs which was over half the entire time I was there

Other things to consider

I pack some snacks that aren’t smelly: cheese strings, apples and crudites, protein shake, nuts, etc. Infusions are done in a shared space with lots of different medications running and some of them might cause nausea. No smell snacks are the considerate way to go.

My husband and I pick up or order dinner after the infusion. I’m too ‘mellow’ to make dinner and let’s be honest, I just had a 3-5 hour infusion for a chronic medical condition so yes, a nice dinner thanks. I’ve had my favourite salad and steak before from a local restaurant. For my summer infusion this year, we picked up dinner on our way back home from my favourite sushi place that happens to be a few blocks from the infusion clinic. For the one coming up in a few days, I placed an order for a charcuterie board from The Market-Black Diamond that hubs can pick up after he takes me to the clinic.

We really make a day of it so I actually look forward to infusion day. I stay as chill as possible during the infusion and sleep as much as I want. Sometimes I’ll rewatch an old movie while I’m awake. To Wong Foo, Fried Green Tomatoes, Roadhouse, Selena, and Dirty Dancing are always in rotation. When we get home, it’s food and couch time for the rest of the evening since staring mindlessly at a television is all I’m interested in doing.

I’m lucky that out of all the crap MS brings, my twice a year infusions are the easiest.