This Is What Happens During A Remicade Infusion (Part 1)
Two years ago, my dermatologist and I decided to stop Humira and try a different TNF inhibitor, Remicade (infliximab). As an off-label prescription, this medicine is considered an experimental way to treat HS. There was not a lot of available information on what to expect, especially for someone with HS. No one I knew had tried Remicade infusions. As my first infusion date loomed closer, I grew increasingly nervous.
I hope by sharing my Remicade infusion experience, I will answer for some people the questions I had myself. Based on my most recent infusion, this is how Remicade infusions usually go.
Step 1: Make an appointment at the infusion center
Remicade is administered intravenously, through an IV, generally at an infusion center. Infusion centers are often attached to a hospital or medical practice. My current infusion center is downtown at the largest hospital in my city.
Upon arrival, I valet my car because parking is scarce at this hospital. When I entered the building, the hospital staff took my temperature and asked me COVID-19 screening questions due to the COVID-19 pandemic. Then I took the elevator to the infusion center where I checked in with the scheduler. She already has my next infusion scheduled six weeks out. My next infusion is scheduled for the beginning of May, but I always have the option to reschedule if needed.
Step 2: Measure your vital signs
After waiting, a nurse will come to get me from the waiting area. There are a couple of nurses from this center who I now recognize. Since I go to the infusion center every 6 weeks, this process has started to become routine. The first thing we do is measure my vital signs.
I step onto the scale and she records my weight. The amount of Remicade I receive is proportional to my weight, so it is important that it is accurate and recent. The nurse cannot order the medication to be filled by the pharmacy until she gives them my weight.
After my weight is recorded, the nurse takes me to my private chair. She checks my blood pressure, temperature (again), and heart rate. Measuring vital signs is especially important for an infusion. The nurses are checking to ensure that I do not show signs of an infection and to measure if I have an adverse reaction to the medicine.
Step 3: Lots of poking
After the nurse measures and records my vital signs, she gathers supplies for starting an IV: a small needle and IV catheter, alcohol to prepare the skin, vials for blood, tape, and other supplies.
Starting an IV is an essential part of this process and some nurses are better at this than others. I always warn my nurses that my veins make it hard to start an IV. If a nurse is struggling, they do have other options. In this center, they have a vein finder which is a small, mobile ultrasound that they can use to easily see veins.
On this day, my nurse tried and failed to find a vein for my IV. So she grabbed the vein finder and tried again. When she missed, she asked another nurse for help. That nurse tried and failed once more. Then she found a good vein in my hand. Success! This one worked.
I will not lie - this part of the infusion can be hard. It can feel frustrating and painful to have several nurses try to start an IV in my arms. I usually try to put on a brave face but this time I felt more frustrated and upset than usual. And that is okay. I am always reminding myself that it is okay to have an emotional reaction to my chronic illness.
Read Part 2 of this series!
What's in your self-care toolkit? (Choose all that apply)