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Looking "forward" to a Remicade infusion... give me your experience on what to expect!

Tue, September 03, 2019 5:16 PM

I have had UC for 13 years and been on Mesalamine, Asacol, Lialda, Uceris and most recently Budesonide. I have been in a flare since April and can't seem to come out of it. I have a dr.'s appointment next week to set up an appointment to start a Remicade infusion. It would take me 40 minutes to drive to the location. I have done some research on the side effects, but I would like to know what to expect for the infusion itself. Like, how long does it take? Can I read a book? Do I need to bring a driver? Do you get cold or hot? What kind of treatment from the clinic should I expect? I have seen that they will give you Benedryl as well as the infusion, so can I go back to work after the infusion or next day? I know that everyone is different but I want to know what others have experienced. I will be asking my dr. all about these questions as well. Thanks in advance for all of your support and advice.

mandista
Joined Jan 15, 2009

Sat, September 14, 2019 2:55 PM

Reply posted for mandista.

Look out for severe joint pain or rash. Most people are completely fine after the infusion, so don’t worry too much, but if you have severe joint pain in the knees, hips, or ankles that is recurring you are probably experiencing a delayed allergic reaction. I had pain about two weeks after every infusion for the first three times and it was the worst pain I had ever felt. Luckily since I switched to humira I haven’t had any other major complications. Good luck!!!

kylavan456
Joined Sep 14, 2019

Wed, September 04, 2019 4:05 PM

Reply posted for mandista.

I had my first infusion the day my daughter graduated high school, and had no problem attending after the infusion. In my experience, it takes about four hours, one hour of prep, three hours of IV. The first visit may take longer. I was in a lazy boy chair at my local hospital, i’d Bring my iPad and also had a tv to watch. I got a lunch. Hospitals tend to run cold, they offered warm blankets which were great. I didn’t feel any ill affects after

charbs
Joined Oct 31, 2016

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