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Can these problems be caused by how remicade was administered?

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Ulcerative Colitis
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Posted 3/12/2023 3:41 PM (GMT -5)
I have followed this forum for several years and always find it to be so helpful, but this is the first time that I could not find any answers without posting myself. So, here it goes..

I was diagnosed with UC in 2006 when I was 19, and have been on remicade since 2019 with great success.

Up until my last infusion (Feb 2023) I was getting the infusions at the hospital outpatient infusion center; however, my insurance will no longer allow this and am now forced to go to a private infusion center.

I noticed several differences in the way the medication was administered at the infusion center vs. the hospital but the main thing was that the hospital gradually increased the infusion rate during the treatment process, while the clinic did the same rate the entire time. Which was nice, in that the length of the infusion was much shorter, but I did not feel the same afterward.

Following the infusions at the hospital (with the gradual increase) I always felt like a million bucks the day after infusion, but after receiving it at the clinic (same rate the whole time), it took 2-3 days to feel normal.

What’s worse, is that now I am 2 weeks until my next infusion and feel lousy, along with a slight flare. With the gradual increase in the hospital setting, I would never feel this way. Every now and then the couple days leading up to it would be a little more rough, but nothing like this.

I am wondering if anyone else has experience with this.

Am I crazy to think that these changes could be caused by the way it was administered??
Posted 3/12/2023 11:28 PM (GMT -5)
JanNaq,

Welcome to the forum.

I've been on Remicade since 2015. I go to an infusion center. When I first started my infusions they made me very ill. (Pull over and puke 2 or 3 times on the 2 hour drive home.) My GI had the infusion center start giving my infusion over a 4 hour time period with a steady rate of infusion and time. We do not increase the amount and speed during the infusion. Its a steady amount over the 4 hours. Periodically I will get a new nurse that doesn't know how to program the machine, it speeds up the infusion and increases the amount.... and I get sick on the way home....even though the infusion still lasted almost the full 4 hours. So for me... Absolutely... I can really tell the difference. I called the infusion office manager (she's also a nurse) and everytime I have called in to get the infusion doctor to prescribe more meds for the headache and nausea has been when they haven't gotten the infusion pump programmed correctly. It takes me about a week to recover after my wrongly programmed infusion and I seem more prone to flares the month afterward. I now have a yellow sticky with directions that I take in with me so they don't mess it up. Last month I forgot and had to pull over twice. New nurse and I forgot my sticky and she said she had the information in my chart.

I would assume that other people might have difficulty with the duration, rate of infused medication or even the timing of when they have their infusion.

Personally, I would speak to them and let them know. They should work with you on that. And if they don't take it seriously....and continue to proceed with their own processes.... your GI can write the prescription indicating those factors so they have to do it. (That's what my GI did to stop the "mistakes". Now it only happens once in a looong while. )

I hope you feel better soon.
Clo
Posted 3/13/2023 8:47 AM (GMT -5)
Clo2014,

Thank you so much for your detailed response. It makes me feel better to know that I’m not crazy. Between the side effects of the meds, and the symptoms of the diagnosis itself, sometimes it’s hard to tell what is caused by what and it can make you feel like a hypochondriac or something!

The only issue I ever had at the hospital was when my doc would forget to put my premeds on the orders, so I’m always adamant that we confirm it’s all there before we start or I will not proceed with the treatment.

But at the infusion center, even the benedryl was done differently - syringe straight into my IV, rather than a drip - so I was already feeling wonky in the first few mins of treatment. So, when I went home, I wasn’t sure if I felt “off” because of that or because of the faster rate throughout the infusion.

The following day, I could tell that the infusion rate is what made a difference in how I felt - even my skin reactions were back, which was the reason the premeds were added in the first place, years ago.

When the flare started, I figured it could not be a simple coincidence because just the month prior I was asking to push my treatments further apart because I felt so good at the time - drastic change between one infusion and the next.

Again, thank you - sometimes it is comforting to know experiences that others have had, at least I know I am not alone. I am making a call to my doc today so that he can change the orders before I go for the next treatment.
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