Chapter 10: How to Be Your Own Advocate on Remicade

3 thoughts on “Chapter 10: How to Be Your Own Advocate on Remicade”

  1. My nurses seemed incompetent at my first infusion yesterday. They didn’t weigh me at all. They were all learning a new computer system and most of them had no idea what they were doing.

    1. Oh no! I’m so sorry to hear that! I’ve heard that happens sometimes — when I was on Remicade, I would always weigh myself right before I left for the appointment and calculate the amount of Remicade I should be getting based on my weight. I’m glad the monitored your blood pressure though. Good for you for asking them to recheck 🙂 Don’t be afraid to ask them to give you the pre-meds. Or, it might be better to inform your GI they didn’t give them to you, and your GI can call them and tell them to give them to you for all future infusions. One thing IBD and Remicade, in particular, taught me is to be my own advocate. Don’t feel bad telling them what you need 💪🏼

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