When I was first prescribed a biologic administered via infusion, I felt overwhelmed. I had so many questions and, nowhere could I find all of the answers in one place.
My history with infusions
Over the years, I’ve received a variety of medications and treatments via IV infusion to manage my rheumatoid arthritis and Crohn’s disease. I’ve received infusions in every possible setting, from the hospital to at-home and everywhere in between, and I’ve taken a lot of notes. Notes on what has worked for me and what has not. What tips have been worthwhile and which I should’ve let fall by the wayside much earlier on.
Recently, I shared a whole bunch of tips on preparing for and attending infusion appointments, including how to care for yourself in the days prior, what to bring with you, and how to pass the time.
Today, I want to talk about infusion recovery. I didn’t use to believe this was a thing, to be honest.
I didn't factor in recovery time
I remember when I got my second loading dose of Remicade. My infusion was on a Friday; and on Saturday, I spent a marathon day helping my friend shop for a wedding dress. By the time we left the last shop, I ducked out into a cab, flying back to my apartment instead of going out for dinner and drinks.
I crawled into bed and everything hurt. Like, I just laid there and cried. I hadn’t hydrated well enough or eaten enough substance to support my body in preparation for the infusion, and I also made the naive assumption that I could just be my normal self the following day.
I was wrong.
Three days later, when I crawled out of my room, I vowed never again.
What infusion recovery looks like for me
I’ve now been on Remicade for four years. Currently, I receive infusions every 5 weeks. I almost always schedule my infusion on a Friday afternoon, which then only requires me to take ½ day off work.
A nutritiously dense meal
When I get home from my infusion, I make sure to eat a good dinner. Sometimes, this is much later and after a nap, but it’s before bedtime regardless. Protein, carbs, something easy on my stomach, filling and nutritionally dense. This helps my body immensely.
Trying to sleep well and take it easy
The 24 hours following the infusion, I try to sleep well/longer overnight and take it really easy during the day. Sometimes, I have to be productive with my mind, but it’s really important that I stay pretty chill with my body like not a ton of standing, walking around, cooking, cleaning, etc. I have found the more of a break I give myself the day after the infusion, the less I struggle with side effects and the quicker I bounce back to myself.
Recovery is part of my RA management
I often struggle with guilt over this recovery time, especially now that I am the mom of a toddler. I feel like there’s so much I’m missing out on with my daughter, or things I could be doing while I have time (mental and physical) by myself - that doesn’t necessarily include resting.
I’ve had to remind myself that the time I need to take off for my infusions is critical in managing my RA and that if I don’t take the precautions, an increase in symptoms or a disease flare can take me out entirely, preventing me from parenting and even functioning.
I know that other patients find themselves just a bit drowsy the day after an infusion, while others struggle with more of an infusion hangover. I’d recommend going low and slow, and seeing how your body responds to your new medication. You can always speed up your infusion recovery down the line if you need less time than you’ve budgeted.
If you receive regular infusions, I’d love to hear how you manage your infusion recovery. Are there routine things you eat or drink, say or do or watch? I’d love to hear your stories below!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?