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A Remicade timing question

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Ulcerative Colitis
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Posted 6/4/2009 7:17 PM (GMT 0)
As much as I had decided not to continue Remicade, now that I am just 1 day past the day when I would have received my 3rd initial (loading dose) my stomach hurts and I'm running a low fever.
My guess is that my UC is coming back and with that thought in mind, I suddenly don't care too much about the risks of Remicade or even the reaction I had!

So, I'm contemplating calling my GI and asking to give me the third dose. I've been taking 6mp for 3 days, I'm assuming I can just stop and that won't affect me.

So, here's my question, I was supposed to have the 3rd dose yesterday (exactly 6 weeks), how much does the exact timing matter - can it be a few days off?
Posted 6/4/2009 7:21 PM (GMT 0)
Yes, it's okay to be a few days off. Sometimes I need to change days, and it's never been a problem.

Posted 6/5/2009 12:34 AM (GMT 0)

Lonielane said...
Yes, it's okay to be a few days off. Sometimes I need to change days, and it's never been a problem.

Thank you! I actually called my GIs office and they were gone. I'm pretty sure I'm going to do it again!
Posted 6/5/2009 2:00 AM (GMT 0)
Yeah the timing is not an exact science- I mean, patients are sometimes changed from regular to 2x frequency or back- talk about a change in timing, so even a few days is just a blip. But I know the nurses and schedulers are taught to be anal about it especially in the beginning. Good luck with Remi. It failed me and even Humira seems to be sputtering out now for me but I want to keep it going while I try a few other last ditch things.
Posted 6/5/2009 2:07 AM (GMT 0)
My infusion next week will be 2 weeks late, because I delayed it so I could recover from surgery. I've delayed it as long as 2 weeks in the past with no problem.
Posted 6/5/2009 4:12 AM (GMT 0)
Same here,went 12 weeks, 8 weeks, 9 weeks, 6 weeks... All a part of a study group. You can move it around a bit.
We didn't get remission till after the 5th infusion, and had to switch doses once too. Hang tough. Daughter is in remission for the first time since diagnosis, and it is a happy time.
Posted 6/5/2009 3:52 PM (GMT 0)
Judy,
Sorry to hear you had surgery!

I still can't believe I want the Remicade again, but its easy to talk about not wanting it once I was in remission, but the minute those UC symptoms started to appear, I'm on the phone with the GI telling him "maybe I was wrong about the Remicade"
Posted 6/5/2009 4:08 PM (GMT 0)
Well, good luck! I hope that your infection (pleurisy, right?) was a fluke and wasn't related to the remicade! Who knows, maybe it was related to you having been in the hospital. At any rate, I have my fingers crossed that it doesn't happen again and you can stay in remission for a long time!
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