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Remicade and joint pain

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Ulcerative Colitis
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Posted 2/10/2010 6:29 PM (GMT 0)

I've been on remicade for about 1 1/2 years now and started having joint issues in november.  It seems like since my remicade dose in late october, that about a month after each dose i get this migratory joint pain that ranges from mild to completely debilatating.  It seems to stay in, say, a knee, foot and hand joint for a few days to a week and then switch to a different joint.  My last dose, which was dec. 22nd, was wonderful.  The joint pain went away and i could actually function normally.  Then about jan. 15th the joint pain returned and i've been dealing with it every since.  I did go to my general practioner back in early dec. when the joint pain really settled in my left shoulder and i could hardly move my arm.  They just told me to take over the counter pain relievers and use the joint pain patches.  They didn't really help, but eventually the pain moved to a different joint.  Has anyone else had this happen?  Is it just the ulcerative colitis attacking my joints or could it possibly be the remicade?  I do have an appointment to see my gastro next monday and remicade tuesday.  I'm just wondering what exactly i should tell him and how to get this to stop.

Thanks

Posted 2/11/2010 12:21 AM (GMT 0)
This happen to me and when i told my GI he took me off the remicade to see if the pain was from that or from the UC.
The only difference was I was only on my third infusion when the pains started.
they pains have not gone away and my last infusion was in September and was due to go back for my next infusion 2 weeks later.
all my other UC symptoms had stopped, so it was working other than the pains.
I was put on Imuran in Nov and I have been flaring since.
I was with him today and he has decided to try me on Humria as he now thinks my pains may be UC related or RA related,
So really I can't tell you what to do but tell you gastro about the pains.
I just wanted to let you know you are not alone
Posted 2/11/2010 12:54 AM (GMT 0)
Thanks for the reply. It's good to know i'm not the only one with this problem. I'll definitely be discussing it with my gi on monday and see what he says. i"m sorry to hear about your joint pains, hopefully you can find an answer your pain as well.
Posted 2/11/2010 1:09 AM (GMT 0)
Hi kshoe :)

I doubt if it's the Remicade, it's more likely your U/C manifesting in your joints too... which would explain when the Remi starts wearing off, your pain returns... They use Remicade also for RA and have had much success with it. I did one infusion of Remicade and felt GREAT, until 3 weeks later and then I developed really rare neurological side effects so had to stop taking it.. I was SO BUMMED... I hope you feel better and hang in there :)
Posted 2/11/2010 5:23 AM (GMT 0)
I have joint pain and i've been on remicade since July 2009.  I also have been getting a really stiff neck.  When I went to the GI about 4 months ago they said it might be from a cold I had then.  Well, I just seen my GI and she said all the pain I'm feeling is most likely because I still have active disease.  I still go to the bathroom about 4-6 times a day but the remi has helped alot.  I don't want to stop taking it.  I get joint pain to about a month after my infusion.  I feel like i'm an old lady(I'm 30).  When I get up from a chair I almost collapse.  I have a colonoscopy to see if the remi is working and if there is still active disease in March.  I'm sorry you have to go through this. 
Posted 2/25/2010 10:06 PM (GMT 0)
I am so happy to hear that I am not the only person with this issue.  I have been receiving remicade treatments every 8 weeks since November 2006 and in turn have been in remission since.  I've been able to eat whatever I want and still feel good as the colitis is concerned.  However, this past November (2009) I began having joint pain and swelling that jumps around from joint to joint sometimes affecting as many as 5-6 joints at a time.  I went to the internest, rheumatologist and gastroenterologist and it appears that they all think it is a side effect of the colitis.  But my colitis is inactive.  The gastro also told me that a small percentage (maybe 7%) of remicade patients may experience joint pain.  I have been instructed to just load up on ibuprofen, but that doesn't really help much.  i am beginning to get depressed as I agree, it is debilitating.  I've tried changing my diet and getting back on colozal.  Nothing works.  Does anyone have any advice or insight?  I'm desparate!
Posted 2/25/2010 10:17 PM (GMT 0)
i feel your pain.....the joint pain is horrible....i would rather go to the bathroom 10 times a day then have the joint pain
Posted 2/25/2010 10:27 PM (GMT 0)
I've had joint pain on and off for years that comes and goes especially when I'm flaring.  I haven't noticed any difference in my joint pain since I began Remicade.  I take Advil for mine.

Good luck to you!  :-)

Posted 2/25/2010 10:51 PM (GMT 0)
The place I get my infusions at is actually at a group of rheumatologists office. There's always two or three people in there with RA getting remicade for their joint pain.
Posted 2/26/2010 3:47 AM (GMT 0)
Yeah, i had my appointment with my gastro and he seems to think i may be developing RA. Says he's pretty sure it's not the remicade. So i have an appointment to meet with a rheumatologist on march 24th. Since i had remicade on the 16th, i've been feeling great. The joint pain is gone. But i figure by the time of the appointment, i should be fairly crippled again, as it seems to return within a month of remicade. Hopefully it'll get figured out eventually (probably with multiple blood tests). Once i get a definitive diagnosis from the rheumy, i'll be sure to let everyone know what he says.
Posted 2/26/2010 6:11 AM (GMT 0)
Remicade worked somewhat for my UC but definitely caused me some joint pains- elbow, wrist, and shoulder. I was switched to Humira which also works somewhat for my UC- and have not had joint pain issues with that, though its effectiveness has decreased over time. I have never and do not have joint pain issues from my UC- I only get joint pains sometimes with higher doses of prednisone- so I assume it is a side effect from the human body protesting these alien, mouse-derived biologics.
Posted 2/26/2010 9:07 AM (GMT 0)
sorry to say but the joint pain is a sign the uc is back as im having the same trouble as you, they took a look inside and there it all is again =[ hope they can sort you out soon =]
Posted 2/26/2010 2:26 PM (GMT 0)
Yeah, I had terrible shoulder pain this time around; about three days before my infusion. I haven't had it in a while, but it's like someone is sitting on my shoulders and the pain radiates down my arms. As soon as I had the Remi, I mean literally 20 minutes into the infusion, it left. I was kind of thinking it might be Ankolysing Spondalitis which is joint pain associated with UC, but I'm not really sure.

Posted 2/28/2010 5:31 AM (GMT 0)
I have never been on remicade but I have HORRIBLE joint pains. They feel like they are shattering to pieces. I did notice it is worse when we have a low preassure moving in and if we have a low preasssure & cold front I can't find a way to sit, lay or stand that doesn't hurt. My doctor gives me Vicodin for the pain and I take tons of hot baths and heating pads are my friend and Perfromance Rub by BioFlex help some.
Posted 1/20/2024 6:29 AM (GMT 0)
Hello folks. Wonder if ppl still get notifications for this thread. So I’m on remicade, I’m 34 years old. It’s 2024. And I’m reading all these comments above. And let’s just say it’s ALL happening to me. SPOT ON TOO. Reading this forum is like reading my mind right now. It’s insane now spot on everything is. It’s alittle creepy. But I now find myself in the situation to where the debilitating joint pain is intolerable. Idk what to do, and yes I’m 1 week out from my infusion everytime. So it would seem that it’s definitely the lack of remicade on my system. Because as soon as I get my next infusion, I feel great. I am every 8 weeks with the infusions though. I’ve only been on Remicade about nine months now, so still a fresh guy on this. But yes, heating pads, hot tubs, massages are my only help. Buy when it’s gets bad, I can’t even walk. And I was just running yesterday. It moves around from joint to joint fast too. i’m hoping with the amount of time someone will have a good answer now from reading other forms maybe one of these two medication‘s would help with this new arthritis I’m getting. Sulfazine or Mobic? Idk I just read others mention them. Maybe there is newer meds out for this specific issue now ? Buy my G.I. Isn’t much help on the joint pains. Anyone. Please lmk. Thanks !
Posted 1/20/2024 3:54 PM (GMT 0)
Hi Chip, have you had your trough levels checked, if not ask your dr to run the test. Depending on the results, you could possibly move the infusions closer together.

Other than joint pain are you having any other symptoms?

Stay away from Mobic it's an NSAID, people with IBD avoid NSAID.

Welcome to the forum.
Posted 1/22/2024 1:34 AM (GMT 0)
I had a lot of joint pain at first. Joint pain always came along side my UC symptoms. Once we moved my infusions to the very 4 weeks ( due to UC symptoms), the joint pain also stopped. Moving your infusions closer together might help
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