The Ultimate Guide to Infusions From a Patient Perspective
The Ultimate Guide to Biologic Infusions: A Patient Perspective
A checklist of what to bring, what to expect and how to recover!
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As someone with a chronic illness (Psoriatic Arthritis, to be exact!), I go into my rheumatologist’s office every eight weeks for my biologic infusion. I feel no shame in calling it my “go-go juice” because within 24-72 hours, I am a brand new person.
It has been about ten months since I starting my infusions – Remicade – and it has been the first medicine that has truly made me start to feel like a normal person since I started having joint pain six years ago.
When I first started my infusions, I scoured the internet – and even Pinterest and social media – for tips on how to prepare for my infusion. I came across a blog or two, but overall, the internet kinda let me down. Now, six or seven infusions later, I have my routine down and I’m ready to share it with you!
Typically, my infusion appointment lasts about three hours. Sometimes longer, sometimes faster, depending on my wait time, how busy they are and how happy my veins are to be poked that day. Some medications can be infused as fast as 15-20 minutes, while others can be four or more hours.
I’ll note here that every infusion center and doctor’s office runs things differently! Below is my experience and my advice based only on my experience. And a quick reminder: This is not medical advice nor does it intend to be.
Preparing for infusions
The night before, I shower – washing my hair and all. It makes things a little easier because my infusion appointments are first thing in the morning, so it is one less thing to worry about.
Next, I pack my bag. I typically take a tote bag and fill it with my favorites:
- MacBook Air
- iPad or Kindle Fire Tablet
- A few sweets (my favorites are almond M&Ms or dark chocolate almonds!)
- A few salty snacks (my favorite gluten free crackers here!)
- A protein-filled snack (like my favorite jerky or a protein bar)
- A notepad and pen
- Water and a favorite beverage
- Sudoku or favorite puzzle on paper
- New for 2020 and COVID-19: A face mask
- A pair of fuzzy socks
- Travel blanket or pillow
The big thing I’ve realized during my infusions is I absolutely need a snack. I forgot a snack twice and became really nauseated about halfway through. Unfortunately, at my doctor’s office, they only have snacks with gluten (surprising, I know!!), so I was completely out of luck that day. Bring a snack is my absolute biggest tip!
Another big tip for the day before your infusion: DRINK LOTS OF WATER! Think you’re great at keeping up with your water? Cool, drink even more than that! It will help your cute little veins when they’re getting your IV set up and personally, I’ve found the more hydrated I am, the easier recovery will be.
The day of infusions
What to wear to your infusion
My second biggest tip on infusions is to dress comfortably, especially if your infusion lasts more than 30 minutes!
In the warmer months, I typically wear a maxi dress like this one, along with a chunky, oversized sweater. Emphasis on oversized! They have looser sleeves which makes it easier to roll up while they insert the IV, then you can roll it back down to stay warm and comfy.
If it’s in the cooler months, I’ll wear some comfortable, looser (boot cut) exercise pants and a sweater I can easily roll the sleeves up.
I made the mistake of wearing tight, comfortable yoga pants/leggings to an infusion once.
Why didn’t yoga pants work? Because of the fluids they pump through you during your infusion, you’ll likely need to make a restroom stop at least once. Depending on where in your arm or hand your IV ends up, you sometimes end up one-handed. Have you ever tried to use one hand to take tight-fitting yoga pants off? Oof. Oof!
If you can manage fitted yoga pants one-handed, then by all means, GO FOR IT. Here’s a link to my favorite pair!
What to do before your infusion appointment
Eat a hearty breakfast or lunch, depending on your appointment time. Whatever fills you up and keeps you full is great.
Think protein and complex carbs. Oatmeal, breakfast sandwich, protein bar… whatever floats your boat and keeps you going. Even if you don’t eat breakfast (like me, due to intermittent fasting), this is your one day you should be eating breakfast.
Check in before you get to the office, if possible. My doctor’s office has moved to online check-ins.
Typically, I receive an email before my appointment to check-in, go over my health, pay co-pays, verify insurance, etc.
If I’m not able to check in online before, I check in on my phone when I arrive. That way, I don’t have to touch any other objects anyone else may have touched – keeping it clean!
At your infusion appointment
My most recent infusion was my first in a post-COVID world. It wasn’t too different besides the COVID screenings in the parking lot and buildings, plus requirements like a face mask, taking temperature and so on. Every other chair was blocked off to maintain social distance.
Once I arrive at my appointment at my rheumatologist’s office and I’m checked in, they bring me back and ask a few questions:
- Have you had any recent infections?
- Have you been on any antibiotics?
- Have you had any recent surgeries?
- How are you feeling today?
I’m weighed by my infusion nurse, since my medication is dosed based on my weight. Blood pressure, pulse, temperature, all vitals are taken after that.
At my doctor’s office, you’ll be placed in a private room if you’re seeing the doctor that day. If not, we get an option between the TV room or the “quiet room” which is shared with other patients. This varies depending on the location and your office’s preferences.
Most of the time during my infusions, I’m either working on my laptop, scrolling Pinterest, or watching a TV show or movie. As a mom, I kind of look forward to my infusions because I can sit back, relax, and sit quietly for a few hours when I’m not 100% exhausted at the end of the day!
During my infusion, I make sure to eat a few small snacks and stay hydrated. I find that when I’m able to drink lots of water during my appointment, I recover a lot faster.
After your appointment
Depending on what other medications you’re given during your appointment, you may drive home or have someone drive you. I’m incredibly lucky in that my husband often takes a half-day on my infusion days, so he’s home to hang out with our toddler while I nap, take it easy, and rest in bed.
Sometimes I feel okay after my appointment, and I will continue to work on my laptop in bed. I’ve found that even when I do that and I don’t truly rest, my recovery takes longer.
When I chill, watch some Netflix, eat a healthy snack or two, drink lots of water after my appointment, I’m able to feel a lot better the next day. When I don’t take it as easy, I don’t truly feel back to normal until about 30 hours after my appointment or two days later.
It’s different for everyone! Once you start having infusions, you’ll find what works for you.
My best advice is to take it super easy at first, then build up what you’re able to do after each infusion.
Good luck! And shoot me an email, find me on Instagram, or comment below with any questions you may have about infusions!