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Remicade and leg pain?

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Crohn's Disease
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Posted 1/1/2012 3:13 PM (GMT 0)
I had a Remicade infusion yesterday morning, went home and went to bed because it always makes me really tired. When I woke up, I had really bad leg pain and it hasnt let up at all. It doesnt feel like sore muscles or muscle cramps, and its not in my joints. I also woke up with pain in my left shoulder, neck, ear and jaw, which feels a little better now. This has never happened before. Has anyone had this happen? I am also weaning off of Entocort from 9mg to 6mg for 2 weeks then 3 mg for 2 weeks. Could this be withdrawal symptoms? Please help!
Posted 1/9/2012 1:09 AM (GMT 0)
I did some research and yes it seems to be related to the remicade. Many people started getting pains. The time it took varies. I'll keep looking for any solutions.
Posted 1/10/2012 2:14 AM (GMT 0)
I had leg pain after my last Remicade infusion. I also started testing positive for remicade antibodies right before this infusion (I didn't get the lab results back until after.) It might be a reaction to the Remicade....
Posted 1/10/2012 11:10 AM (GMT 0)
You might want to bring this up to your doctor and have bloodwork done for antibodies. Especially if it lets up after a few days.
Posted 1/10/2012 11:34 AM (GMT 0)
I almost always get a bit of bone pain up to 14 days after an infusion.  I take some tylenol and chill for a bit if able.  Never lasts more than a day for me.  Also found a hot shower helps.
Posted 1/10/2012 1:49 PM (GMT 0)
I used to get them on Remi.  It was so bad that I had to take Tylenol Arthritis to ease the pain.  It would be so bad at times that I couldn't walk.

With that said, talk to you doctor.  My doctor believed that it was the start of developing the antibodies and took me off the Remi.  Once I went off, the pain never came back.

I hope you feel better.  I remember the pain like it was yesterday.  It would last almost a week.  I wouldn't wish that on anyone and I am sorry you have to go through that.

Posted 1/19/2012 11:19 AM (GMT 0)
My joint pain came from remicade induced lupus. It got pretty bad. It is 9 weeks since my last infusion. The GI wanted me to keep going but I said no and went to a rheumatologist who diagnosed me. The pain can be totally incapacitating where my life would stop for 12 -24 hours and my GI just couldnt seem to accept it was the remicade. So, now I am off it and starting very slowly to have less pain. The remicade put my Crohn's into total remission. My new GI said it would probably happen with Humira too........ Anyone ever make that switch? I tried the 6mp but wound up in the hospital with pancreatitis. I am thinking my body does not like immunosuppresants...............................
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