• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Starting Remicade tomorrow: what will it be like?

I have my first infusion Friday at 3:00 pm CST. When I made the appointment, they told me to plan for 3.5 hours. I know I'll be hooked up to an IV, but I'm curious about what people do while they ae hooked up. Do you read? Sleep? Are there a lot of interruptions, or are you pretty much left alone? How do you typically feel afterward? Are you able to drive home, or do you need someone with you?
 
My son gets his infusion at his GI's IV lab. There are a number of recliners in a room with a big flat screen TV. They have movies, or you can bring a movie, they have xbox, wii and wifi. They provide snacks and drinks during the infusion, they also provide blankets, and it is kind of chilly. My son either sleeps, watches the movie or does his homework.

My Mom has RA and gets her infusion at a hospital IV lab, there are others in the lab getting infusions at the same time. She says they provide water and have magazine and books available to read.

I think it may differ from place to place.

The nurses are sort of ever present and come by and check your numbers and what not every so often. They do sometimes give benedryl or other antihistamine before the infusion which tends to make my son sleepy. It would probably be a good idea to take someone with you the first time or have a ride available.

Afterward, we take my son out to eat and then have quite a drive home so he usually sleeps for awhile. By the time we get home he is ready to go and feels good but I think others feel a little tired or flu like symptoms that last a day or so.

Good luck hope all goes well!
 

Jennifer

Adminstrator
Staff member
Location
SLO
I mainly talked with the nurses and other patients who were hooked up to their IVs. It was pretty entertaining at first meeting new people. Other than that if you don't want to talk then you don't have to. The nurses periodically ask how you're doing and leave you to yourself. You can read, sleep, watch movies, go online, basically do whatever you want, you just can't leave. If you need to use the bathroom then you can take the IV with you but they prefer it if you go before you're all hooked up. I highly recommend that you do. I had to pee so bad after my first infusion.

During the infusion I started feeling sleepy. That was from the Remicade as it can make some people tired. I was given a non drowsy antihistamine before each infusion, they also gave me Tylenol too. Don't take Tylenol or an antihistamine before your infusion (unless they say you can). If you start to feel weird in any way be sure to let the nurses know yet they are usually in the room monitoring the patients. You're blood pressure is also monitored.

Most people are able to drive afterwards but if you want you can arrange for a ride to see how you feel after your first one. I think I probably could have taken care of myself after my first one but I had a ride just to be sure.

Good luck and let us know how it goes. :)

Edit: We were not provided snacks but were allowed to bring our own. We were provided blankets though and the infusions were done in our doctor's office which wasn't too far away from the hospital.
 
Thanks so much, Jennifer. That's all helpful info. Of course I will have to pee several times, but I won't mind dragging an IV along.

Do they typically allow a visitor in the room with you?
 

Jennifer

Adminstrator
Staff member
Location
SLO
Oh sorry, I forgot about visitors. At the place I went to it was fairly small so it was ok to have like one person but more than that would be a bit much. Sometimes there would be an empty recliner and my husband would sit there with me. Another time my sister came with me and there was only a stool to sit on but she didn't mind (that was just her, not my husband too). Be sure to call and ask to be sure or you could ask during your first infusion or just bring someone along and hope for the best. ;) I don't see why not though. I can't imagine a smaller place than the one I was at.
 
Thanks again, Clash and Jennifer, for the info. I'm just about to end my first loading dose and all is going well. It's really noisy here though. (Especially the guy in the next chair who's snoring) Next time I'll bring music and headphones.
 
I go every 4 weeks, I usually have someone with me as I get pretty tired, I could drive but I worry about my reaction time while driving and I would never want to cause an accident. I bring my iPad, books, my kindle fire and plug in my ear plugs and listen to books or just chat with whom ever comes with me:). And i bring snacks :)
Good luck, will be thinking of you:)

Michele
 
Top