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remicade - feeling lousy

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Ulcerative Colitis
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Posted 6/2/2009 9:11 PM (GMT 0)
Hello all,

Just wondering if anyone else has been in my situation.  I've had 4 remicade infusions so far and up until yesterday would have told you I had no side effects.  For the last few weeks, I have been increasingly tired, becoming out of breath quickly, and just achy.  I was all set to call my primary doctor when it struck me that maybe it is the remicade?  It has been 3 weeks since my last infusion.  Would the side effects last that long?  Are these even side effects of remicade?  Thanks for any input.

Posted 6/3/2009 12:23 AM (GMT 0)
I don't think it's the Remicade. My GI told me side effects usually happen pretty close to the infusion, if not during. Is the Remicade controlling your flare? What you describe is how I feel when I am in a long term flare, especially fatigue. Have you had your iron levels checked lately?
Posted 6/3/2009 2:33 AM (GMT 0)
There is lots to check. Protein-Creatian levels, ANA, Specific gravity---lots can be skewed by the Remi. We are now testing for drug induced Lupus from the drug, so keep you eye on things. We didn't get good UC relief till the 5th infusion, then it was magic. Hard to know what the symptoms you are having are connected to. Keep a diary, daily.
Posted 6/3/2009 2:03 PM (GMT 0)
Momhatesuc, were you on pred prior to the Remi? Sometimes it just takes the body a while to adjust; I think I remember having some of those episodes too. I would just hit the wall all of the sudden and couldn't move. I would go home and sleep it off. It doesn't hardly happen anymore, but I do remember having them at least once a month. So, take the time and listen to your body. It might even be the healing process. Call your doc of course if it continues.

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