Remicade is a common biologic that many IBD patients will try along their IBD journey. But starting a new medication can be nerve-wracking, especially if it’s the first time you’ve been on a biologic!
In this blog post, I share my experience receiving my first Remicade infusion. If you’re thinking about starting Remicade, keep reading so you know what to expect for your first infusion.
Feeling Nervous on My Drive to the Infusion Appointment
One fine day in March 2015, I missed class to go get my first Remicade infusion.
I drove myself to the hospital, hands clinging to the wheel. Nervous. Feeling totally unprepared. I had no expectations because I didn’t know what this experience would be like.
The drive felt like forever and five minutes at the same time. Finally finding a parking place after twisting my way through the intertwined roads of Sacramento, California, I drew in a breath. Pep talk time. Okay colon, I’m taking back the reins. If it takes sticking a needle into my arm and getting a medication placed directly into my veins, so be it.
Getting My Vitals Taken at the Hospital
I found my way to the waiting room and sat there nervously for a few minutes. Then I followed a nurse into the infusion ward. She took my temperature, height, and weight, explaining that they’ll take my weight before every single infusion because it determines how much Remicade you get that day.
I started with the lowest dosage, which is 5 mg per kg of body weight, which was about 280 mg for me.
The Infusion Ward Setting
Next, she led me back to the infusion room. There were a dozen chairs throughout the room with people hooked up to IVs.
I have to say, the mood was a bit dim. Remicade is typically dosed in the chemotherapy ward, so some patients were receiving cancer treatment and others were getting infusions for rheumatoid arthritis.
I sat comfortably in the cozy sofa chair and the nurse’s aid offered me a pillow and blanket. I said yes because it was freezing and I knew this would help relax me and take away some of my nerves.
Getting Blood Drawn
My GI sent orders for me to get blood drawn before every infusion. That way, my doctor can analyze these results to catch any abnormalities, deficiencies, inflammation, or signs that Remicade might not be working.
I also get my liver enzymes checked at every infusion, including CBC, CMB, CRP, GGT, and Sedimentation Rate.
It’s great to know my doctor always has eyes on what’s going on inside my body so we can catch things before they happen!
Taking 3 Pre-Medications to Prevent Reactions
Next, we started the process by taking my pre-medications: Tylenol, Benadryl, and Solu-Medrol. Solu-Medrol is basically an IV version of prednisone. (Don’t worry, it’s not enough to give you moon face or the other awful prednisone side effects).
The purpose of these three medications is to reduce the chances of getting negative side effects from the Remicade.
Specifically, they help prevent the patient from experiencing hypersensitivity, which is the immune system’s exaggerated response reacting to a foreign agent (Remicade) entering the body.
The chances of hypersensitivity are even higher during your first infusion, so I really needed to get these meds into my system. I took the Tylenol orally, but the Benedryl and Solu-Medrol were given through my IV.
Feeling Drowsy from the Benadryl
If you’ve taken oral Benedryl, you know how quickly it can take effect. Now imagine it pumping straight into your bloodstream!
I immediately became extremely sleepy. My eyes closed, my head nodded, and speaking became a chore. The nurse squeezed it slowly through the syringe and I felt peaceful and relaxed for the first time in what felt like forever.
Starting the Remicade Infusion
Once these pre-meds were absorbed, they switched out the syringe for a long IV tube attached to a monitor on wheels. The nurse taped the tube to my shoulder and on my forearm so that it was easier to manage and less likely to tangle.
The Infusion Was Surprisingly Relaxing
I remember the nurse explaining that now the Remicade will be entering through the IV; my sleepy ears heard her and I nodded with my eyebrows raised high but my eyes unable to open.
The bag of Remicade hung from the top, and—still drowsy—I remember seeing the clear liquid drip, drip, drip, down the bag, through the plastic tube, and straight into my veins.
It felt kinda surreal. In this peaceful dream-like state, I paradoxically felt both relaxed and anxious. Relaxed from the Benadryl, but anxious that I was attached to this machine for three hours.
I pressed into the peace, focusing on this time that I could just be.
No homework. No studying. No organizing my next week’s medications into my pillbox.
It was a peace I had become unfamiliar with. Like a part of me that my disease stripped away was being reconnected. I let my thoughts wander as I fell into a wonderful sleep.
Periodically, the machine would beep, and the nurse would stop by my station to turn the alarm off. She’d check on the infusion’s progress, increase the rate, and take my blood pressure. Then back to sleep I’d go.
This is how it went for the three hours.
Lunch Time at the Infusion Ward
The final time I awoke, the nurse’s aid was standing by me, offering food! Hospital food is not known for its quality, but for some reason, this sandwich was so delicious!
This simple chicken sandwich, this plain-Jane bread with a single tomato slice and a sole lettuce piece, was absolutely amazing. For whatever reason—the pre-meds, the Remicade itself, or perhaps the long nap—made this sandwich oh so fulfilling. The food woke me up and by then, the Benedryl had worn off.
“All done!” the nurse chimed.
She extracted the needle from my skin and removed the blue tape that had secured the long IV to my arm.
OUCH! I have no doubt that yank took some arm hairs with it. To be honest, that tape removal was so much more painful than the needle’s poke!
How I Felt Immediately After the Infusion
After the nurse placed a Band-Aid over my war wound, I gathered my things and walked out of the hospital awake, (energized actually!) with my veins flowing with sweet, sweet Remicade.
I have to say, I felt better immediately. Even during the infusion. I felt like it was putting my body back together. Like my colon was a broken puzzle and Remicade was the mastermind who could make it whole again.
What I’m trying to say is that I hadn’t felt this good in a long time.
How I Felt Over the Next Two Weeks
This goodness continued throughout the next two weeks before my second loading dose infusion.
I was able to make plans AND stick to them.
I was able to enjoy my time away from my apartment.
I was no longer scared of being without a bathroom during 10-minute car rides.
I had normal bowel movements! Like from the good ol’ days of pre-diagnosis. I told my parents that I will never take a normal poop for granted again. It’s the little things in life, guys 🙂
And Remicade—the scary IV drug I initially dreaded—reminded me of this. It boosted my quality of life and gave me the freedom that I had forgotten I once had. From day one, it began to stitch hope back into my life.
Questions about My Remicade Experience?
I hope you found this blog post helpful! Do you have questions about something I didn’t cover here? Drop a message in the comment section below, or reach out to me privately here. Chat soon!
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