ridiculous joint pain - maybe remicade :(

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New Member

Date Joined Jun 2008
Total Posts : 14
   Posted 10/28/2008 9:49 PM (GMT -6)   
I've been on remicade since last March and was doing really well until a month ago when I had my last infusion. After all my previous infusions I always felt really really good in terms of stomach stuff. While my last infusion helped some, it didn't make me feel great. This is also the first time that I've experienced joint pain the next day. I laid in bed for a few days afterwords with really awful joint pain and stiffness that went down to a mild pain and only in a few joints so I never really worried about it. Last week though I started having the really bad pain and some stiffness again so I called my GI and she thinks I may be having a "lupus like reaction" so I had blood work done yesterday to test for remicade antibodies.

I guess I was just wandering if any of you had had this sort of reaction and what happened? When did you start feeling better? Its been coming and going to various degrees of severity over the last week and a half but it never totally goes away. I'm getting really sick of feeling so awful. I'm in college and next week is the last week for the quarter so I'm coming up on finals and am totally stressed anyway without having to deal with this joint issue. I have a million things I need to be doing but can barely move to get them done. All I would like to do is sleep. Any help? I've never really had joint pain with my crohn's before and am not sure what to do to make it better? I've been taking tylenol arthritis but it only helps to take the edge off. smhair
Dx Crohn's 12/02 at age 14
Blood clot in right leg 12/06, another on brain 10/07
currently on Remicade, 7.5 every eight weeks, coumadin

Veteran Member

Date Joined Jan 2005
Total Posts : 1709
   Posted 10/29/2008 5:38 AM (GMT -6)   
Sorry to hear you're in so much pain. I had to go off Remicade for this reason. While it did wonders for my CD, it did a number on my joints. I never had a blood test for antibodies but the rhuemy and new GI said it was a no brainer. A couple of days after my infusions I would get debilitating joint pain that would slowly ease up but never completely leave. After about a month or so with out it my joint pain was nearly gone. But man do I miss what Remi did for my CD!
Have you seen a rhuemy jus to rule out any other arthritis issues?

Regular Member

Date Joined Aug 2008
Total Posts : 320
   Posted 10/29/2008 12:14 PM (GMT -6)   
That is one reason I cna't take Remi. It affects me very badly. The last infusion I had, over 1 yr ago, caused intense pain in my jaws and my shoulders. They were almost locked up the pain was so bad. Too intense.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/29/2008 7:55 PM (GMT -6)   
HI I did notice some leg pain kinda nasty and would have to use a crutch for a few days . I have been off it for a year and it still will get bad if I overdue it. I never got any testing done so will be interested in what you find out. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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