I have now had three (and a half) Remicade infusions and four Entyvio infusions. I had a lot of questions and anxiety about how the infusions work and really didn’t know what to expect. Here are some of the questions I had before starting. Note that these observations only apply to my own experience at one infusion center; feel free to add any advice you have based on your experience in the comments!
What is the infusion like?
Where I go, you are in a little “room” with a curtain. There is a recliner chair for you (the patient) to sit in, and another chair in case someone is with you. The chair has trays attached to either arm for your things, and there is a small TV. They bring you warm blankets, take your vitals (temperature, blood pressure, pulse), and set up the IV. I usually get some fluids first until the medication is delivered from the pharmacy.
What is a Remicade infusion like?
My Remicade infusions lasted around three hours (not including the time required to set up). I got premeds (Tylenol given orally and Hydrocortisone given through the IV). This would take about half an hour. Then they’d start the Remicade. They would check my vitals every 15 minutes and if things were going ok, would increase the speed of the infusion. The Remicade infusion itself took about two and a half hours. Reactions are not uncommon with Remicade, which is why they go slowly and monitor you so carefully.
What is an Entyvio infusion like?
Compared to Remicade, Entyvio is a breeze. No premeds, it only takes half an hour, and they only take your vitals once at the beginning. Reactions are uncommon. So why doesn’t everyone get Entyvio? It is a newer medication, and my insurance would not cover it unless I had tried other things (such as Remicade) and failed.
Can you use the bathroom during an infusion?
Yes, if you unplug your IV pole and bring it with you. Keep in mind that you won’t really be able to run to the bathroom while you’re attached to the pole, so if you’re worried about that (I was during my early infusions before it was really working), I would wear Depends.
Can you eat during an infusion?
Sure. I always bring snacks and water. There is a water cooler where I go, and sometimes someone has come around and asked if I needed anything and offered to bring me food. When I had a reaction to Remicade, the nurse brought me ginger ale and crackers to help settle my stomach, so I’m sure the nurses could bring me something if I needed it.
What should I wear to an infusion?
I wear comfortable clothes (or as comfortable as you can if you need to go to work before or after). I wear short sleeves so they can easily put the IV in. It’s usually cold at the infusion center I go to, so I make sure to ask for warm blankets, or you could bring a scarf or something you can wrap around you after the IV is in.
Does someone need to come with me?
No, but you can bring someone if you want.
How will I feel afterward?
I usually feel fine, except for after the Remicade infusion where I had the reaction. I’m sometimes tired, but I think that has more to do with the anxiety and anticipation I feel beforehand than the medication itself. Everyone is different though. A friend told me to take the whole day off the first time I had one, and that was good advice. I felt ok afterward, but it was nice to be able to relax on the couch and watch a movie and reward myself for getting through it.
What happens if I have a reaction?
Again, this only applies to my experience. When I had a reaction to Remicade, I started feeling very nauseous and lightheaded, got very flushed, and felt like there was a weird pressure on my face (that part is hard to describe). At first I thought I couldn't be having a reaction because I was fine for the first two infusions, but apparently you can have a reaction to any medication at any time. I was seated right near the nurse’s station, so I told the nurse who was there (there’s also a call button in each room). They stopped the infusion and took my vitals. My nurse paged my doctor’s office. She brought me some ginger ale and crackers and gave me Pepcid to settle my stomach. I was feeling better after a little bit, so they continued the infusion at a slower pace. I was fine for the rest of the infusion. The second time I had a reaction, I was an inpatient in the hospital and it was after hours. They stopped the infusion and paged the on-call physician, who consulted with GI and decided not to continue until my doctor could talk to me the following day. She told me I had most likely developed antibodies to the medication and switched me to Entyvio.
What should I bring with me?
The Entyvio infusion is pretty short, but I still bring a lot of things with me because I get anxious and I like having a lot of options to distract me. Here are some things I bring:
- Plenty of snacks and drinks.
- A book.
- A coloring book and colored pencils.
- My iPad, so I can watch shows I’ve downloaded or listen to music. Podcasts are also good although I can’t seem to get into them.
- My phone, so I can text my mom and sister with updates or call them if I’m freaking out.
And there’s also a TV there. I usually end up just watching TV and not using any of the things I’ve brought with me (except the snacks), but it makes me feel better to have them there.
How much will I have to pay for each infusion?
I was worried about this and tried to find out beforehand, but it varies for everyone depending on where you go and your insurance, so I really had no idea until I got my first bill. There are patient assistance programs: RemiStart for Remicade and Entyvio Connect for Entyvio. Your doctor’s office should be able to help you enroll. Note that these programs will help you pay for the cost of the drug itself. They do not help with the cost of administering the infusion. I have met my out-of-pocket maximum for the year, so I think I won’t have to pay anything for the rest of the year. Since these drugs are expensive, I think this ends up happening for a lot of people.
If you need help with this, I would recommend calling the Crohn’s and Colitis Foundation at 888-MY-GUT-PAIN (888-694-8872).
I try to think of an infusion as kind of a treat: I have some time to myself to read a trashy magazine, listen to music, or just relax and not worry about anything else. I try to reward myself when it’s over. I sometimes feel sad and start feeling bad for myself while I’m there, and then I feel guilty for feeling bad for myself when most of the other patients there are getting chemotherapy. But it is stressful and scary, so I try to be kind to myself.
What questions and advice do you have about infusions? Let me know and I’ll update this post!