Chapter 9: What to Expect for Your First Remicade Infusion

10 thoughts on “Chapter 9: What to Expect for Your First Remicade Infusion”

  1. Great post! It made me cry. I’m getting my first Remicade infusion this Thursday. I have had UC for 12 years and always dreaded the day I might have to go on a biologic, but now I’m (mostly) ready for it. I really want to get off prednisone!

    1. Thank you for your kind words! You’re not alone, I had that same reaction when I was first told I needed to start biologics; it’s such a different territory. But the nurses will make you comfortable, especially if you tell them it’s your first time 🙂 (My advice is to always ask the nurse for a blanket, pillow, and hand warmer, if they have them available. It can be chilly in there and those things always help me relax, too). I’m sure your infusion tomorrow will go smoothly, and I hope Remicade is your forever drug 🙂 I’ll be thinking of ya!

      1. Thanks for the super nice and supportive response! It went fairly well yesterday. I felt a bit lightheaded at the end of the infusion and for about 2-3 hours afterwards but not too terrible. My blood pressure dropped to 88/53 by the end of the infusion, but the nurses didn’t seem worried at all. I was worried so I called them and they told me I could come back in and have them re-check my blood pressure 1.5 hours after the infusion and it was up to 104/63, so closer to normal for me. I have a lot of anxiety about the possible side effects of this medication. 🙁 They didn’t keep me afterwards to monitor me or give me pre-meds, and I didn’t get a super comfy recliner chair or any privacy. I was in a room with other patients getting IV infusions. So that was a bit of a bummer but oh well.

  2. My daughter received her first infusion eight days again. Initially felt amazing but that only lasted a few days. Now back to being sick… she has to get a stronger dose this time in 5 days and we’ll see how it goes. I’m praying it helps her she’s only 16 and has only had UC for 6 mos and no meds have worked thus far. Humira is the next option but I’m hoping to God that hit his stronger dose of Inflectra will do the job! Thanks for your amazing story it’s given me hope. ❤️

    1. Hi Nina. Thanks for sharing this! Starting a new biologic can be really stressful. When I first started Remicade, I also felt a difference right away, but it took a couple doses to bring me into remission. I hope that Remicade starts working for your daughter very soon 💜 And it’s great that her GI already has a backup plan in place just in case. Will be thinking of you two!

  3. My boyfriend is receiving his first infusion soon after several years on Humira. I didn’t even know there were long term non-biologic medications for UC, because after they reduced the inflammation with prednisone, he immediately went on Humira, and that’s the only thing that’s been keeping him upright for the past 3 years. It’s just getting too tedious and expensive. I’m glad to have found this article. It’s comforting to me, and therefore I can be a comfort to him through this experience. I was terrified of the state he was in prediagnosis and the diagnosis felt like a death sentence (though he’s more or less a success story to his GP and GI, fingers crossed that continues), but knowing there are people getting on (at least relatively) fine is nice to see, people who make light of some experiences bystanders might find see much differently. I know he sees this all differently than I do, as he sees my problems differently than I do. It’s just nice to get some perspective. Thank you for being honest and open.

    1. Hey Agnes, thanks so much for your kind words! I’m so glad to hear this article was helpful. I’ll be thinking of you guys as your boyfriend starts his biologic. I’ve been on two biologics so I know the transition from one to the other isn’t fun, but in the end I hope the new medication brings him relief! If you two ever have questions, don’t hesitate to reach back out! Stay safe and be well 💜

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