Before My First Infusion
“My apartment looks like a hospital,” I texted a friend.
I was exaggerating a bit, but it was more unsettling than I'd expected to have two giant boxes delivered to my home full of medication vials, IV bags, tubing, even an EpiPen in case of an allergic reaction. It was the day before my first Inflectra infusion (a biosimilar of Remicade) for my Crohn’s disease, and I was terrified.
Us IBD folks aren’t strangers to needles, IVs, various medications.
However, I’d been solidly on Humira for the last 7 years, for the majority of my twenties, for all of my adult life really, and so the prospect of switching to an infusion med was pretty intimidating.
Inflectra (or Remicade) is typically infused for Crohn’s patients every 8 weeks, but the loading doses occur at Weeks 0, 2, and 6— making the first couple of months on this med pretty packed with infusions (luckily, in my case, they’d be administered at home). I’d been waiting for my insurance to authorize this medication for months, since the moment I’d found out that I’d developed antibodies to Humira. It had been 8 months of increased Crohn’s symptoms— a string of stomach flares in the fall (one every weekend for a while) and months of swollen and aching joints (a new symptom for me, hooray).
This was the day I’d been waiting for.
Issue was, I was really nervous. Awake at 5 AM nervous. Pacing around my apartment nervous. Upset stomach nervous. I scoured the internet that morning for advice, for first-person accounts of infusions, and didn’t find much beyond a list of infusion essentials (I already had a pile going— blanket, socks, book, laptop to binge Buffy with) and advice to hydrate (duh).
I tried to remember how nervous I’d been when I’d started Humira when I was 22, and I couldn’t quite get there. I could picture the first day in the gastroenterologist's office in New York, the multiple loading doses punched into my legs, my sister standing beside me, but I couldn’t remember how I was feeling, how I was mentally preparing to give myself that shot once a week, if I was confident I could do it at all.
The night before my first infusion, I asked my partner about this to see if she remembered (the benefits of being with someone for almost 9 years).
“You were really nervous the first time. You did it in your bedroom, remember? And you called me. You weren’t sure you could do it. I was worried you’d have to go to the doctor’s every week to have them do it for you.”
We talked about how I would call her and put her on speaker for every single one of my injections after that. We talked about the years after I moved back to Massachusetts, how she would wake me up super early on Tuesdays, and I would stab myself with the Humira pen, still half-asleep, to ensure I wouldn’t panic. We talked about how it was only this last year, when I finally got the citrate-free (and almost painless) prescription, that she didn’t have to sit with me in the bathroom during the injection, holding my calf and talking to distract me.
Looking ahead to conquering a new treatment
Now, Humira is a breeze. I’m sad to let it go. I conquered those injections, and the medication gave me a semi-normal life in my 20s. With Inflectra, I want to fast-forward to that part. When the infusion becomes routine. When I barely think about it. When it’s working! (God, I hope it works.) But until then, I’ll sit in my apartment with my cat, guzzling water, waiting for my nurse to arrive, and for everything to change again.
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