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Crohn's Disease
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Posted 6/3/2010 1:44 AM (GMT 0)
Drs appt in a few days... He will probably decide on whether or not to continue remicade and switch to humira.  Mainly this is because of leg pain, which nobody can figure out.  The hope I guess will be to switch to Humira to reduce Joint pain.  But this is all a hope and prayer.  I am kind of use to the leg pain now, and I think the crohns pain is worse to deal with.  He's basically going to ask me what I want to do and I'm nervous.  What if Humira doesn't work? then I can't go back on remicade?  Decisions decisions..... It would be bad if I still had the leg pain and the D flared up, and I couldn't run to the bathroom!
Posted 6/3/2010 4:08 AM (GMT 0)
You know, I take remicade mostly for joint pain. I was walking with a cane till the infusons and not very well at that because my wrist hurt from the cane. You didn't say how long you have been on remicade but it took almost a year for me to be able to walk. I still have pain from time to time in my joints but not as bad. Just food for thought.
Posted 6/3/2010 6:12 AM (GMT 0)
I recently had to go off Remicade, and I've asked my GI about the possibility of going back on it later on. He said there is an antibody test they can do to see if I've built up antibodies. If I haven't, I could go back on. You could probably ask your GI the same question.
Posted 6/3/2010 6:58 AM (GMT 0)
I relate to snipers post, I find the best results from remicade is in the reduction of joint pain. My hands and wrists were so bad I could barely hold onto items at times. Since starting remicade 3 years ago I don't even need to use any painkillers for joint pain. Slowly over the first year the pains got better and better and I hadn't realized it until questioning by my GI made me aware of the fact (I was complaining the remicade was doing nothing for my guts).
Posted 6/3/2010 12:57 PM (GMT 0)
I had a lot of joint pain with Remicade....so much that it made me walk with a cane. When i went off the Remicade it was completely gone after 3 months. Now I'm on Cimzia, only taken one dose so far and I had a lot of leg pain with it for about 4 days after the shots. Docs say they've never heard of this reaction to Cimzia, but I'm a rare one....lol. I seem to get all the side effects that are in the 1% chance to get.

Good Luck and hope they figure it out soon.
-Jeny
Posted 6/3/2010 4:55 PM (GMT 0)
Jeny I sound just like you.... I get all the weird reactions to the medications.  With prednisone started in (June of 2009) I got serious myopathy and steroid withdrawl to where I couldn't walk.  Never had any type of leg pain in my life before this.  Small dose too only 4 weeks decreasing from 40 mgs.  Drs could not explain it.  Drs say both prednisone and remicade should help with any type of joint pain.  Then I started remicade last year in July right after the 4 weeks of prednisone showed no relief (to the crohns).  So I've been on Remicade for almost one year.  Problem is the leg pain never went away, so we are guessing that its the remicade now.  I thought maybe it would go away over time, but a year later and I'm still walking funny.  I guess its the case of what's worse leg pain or stomach?  I guess I'll leave it to the dr to decide.  Thanks for all your help.

Posted 6/4/2010 1:05 AM (GMT 0)
It might be something to think about is if you are getting the remicade induced lupus like syndrome?
Posted 6/4/2010 3:46 AM (GMT 0)
Yep, MMMNAVY, thats what I'm thinking too. I plan to ask for the test. Tomorrow's the big day and I'll have all my questions lined up. Bet they hate patients like me that read alot on the internet. LOL.
Posted 6/4/2010 3:38 PM (GMT 0)
I know people on Remicade and Humira both at the same time so maybe that's a possibility for you. Good Luck.
Posted 6/4/2010 11:17 PM (GMT 0)
Ok Back from the drs.... So, GI dr. wants to keep me on the remicade. Bad news is he is leaving the state to start up his new practice. So I get a new GI. This is embarrassing but I actually cried when I heard that. He finally got my stomach fixed and now he's leaving. Sigh... Then I saw rheumatologist who is running a bunch of bloodwork and an EMG. He said he completely agrees with my concerns and we need to rule out all other diseases to make sure its the remicade causing the leg pain. Including the lupus and lupus like syndrome. FINALLY! He agrees with me! YAY! Bad news is I now have high blood pressure and pharyngitis! He also said something is wrong with my veins. It was very cold in there and I turned blue. He said that is not normal. IDK.... So new internist next week to address the other issues and we'll see what the bloodwork says. He also said that even if nothing shows up, it still could be a side effect from the remicade and he might switch me to Cimzia? Anybody got good results switching from the two??
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