How Long After Stopping Remicade Until Pains Went Away?? Canada Mark, Xeeke, etc...

If I remember right, you guys have said that the pains you experienced while on Remicade went away after 2-3 weeks past your 8 week point where the Remicade would have been out of your system. Is that right?

Yesterday was 6 days past the 8 week point. I took my pain meds in the morning, but skipped them at noon (usually take them then too, and around 6 pm). I thought I was doing okay, but I got to hurting very badly within 2-3 hours of missing that dose of pain meds. It gradually crept in, and I finally had to give in... which meant taking the pain meds and taking a half hour nap on the floor of my renovation project while they kicked in. I wasn't able to do anything until they helped me feel better.

Hi Thoreau- My pains were gone within 3 months after last infusion. But I used a tapering course of prednisone to accomplish that. Wondering why your docs haven't recommended it. Mine say it's the standard course of treatment for those of us suffering with remicade-induced severe pains (and they have treated a lot of us). Like Canada Mark, my pains were completely disabling, as you may recall.
It's hard to imagine your pains would just vanish on their own by simply stopping the remicade, especially since these adverse effects have gone on for so very long for you and yet you continued to put remicade into your body (for good reasons, of course). Just thinking out loud here....
Hang in there - I'm sure there's a way through this for you.

Content, I have never heard of pred being used to get rid of the pains. However, keep in mind that my GI doctors do not think that Remicade is causing the pains. I wouldn't know how to even approach them to ask if they should medicate for something that they don't even believe is a side-effect of the Remi. Any ideas??

Mark, what you have said is pretty helpful to me. Do you recall if those on that long thread needed to use prednisone to get rid of their pains? If any of them had GI doctors that actually admitted that the pains were from Remi, what did those doctors recommend?

My GI doctor has said that he has never had a patient with these pains from an anti-TNF. He said his colleague has, but that his colleague doesn't think my pains are from Remi. I've had to tell them that I really cannot argue outright with their opinion since they are very well educated and I do not have that knowledge... but that I sincerely think these pains are from Remi.

Hi Thoreau - You asked about persuading the GI docs that the pains could be due to remicade. How I did this was by seeing a rheumatologist and then switching to a new GI who worked collaboratively (since the old one was not well enough informed).
Have you seen a good rheumatologist? They can determine the cause of the pains - and for example, help you pinpoint are they muscular pains, neurological, joints? (I had all three types of pains.) It sounds like you have severe arthalgias in any case.
After diagnostic work, my rheumatologist went back to the GI doc to explain the various pain-related adverse effects associated with anti-TNF medications. I saw another GI for a second opinion who was already familiar with this, and had seen patients with pains over several years (unlike your GI).
Of course, the pains could be due to a number of things - even more than one thing, including another underlying disease, extra-intestinal manifestations of UC (or IBD generally), antibodies to one of this class of drugs, or adverse reactions to the drug itself. In my case, it was clearly the latter. Remicade caused the pains. They prescribed prednisone because they thought the pains were inflammatory. They were right. No more pains anywhere! And I wish that for you too.
By the way, I have a high stack of medical journal articles - some in rheumatology journals and only a couple in IBD journals, dating back to 2001, although most of them are from 2006-2011. I found these myself when I was looking for answers. They all say that anti-tumor necrosis factor medications used for inflammatory conditions (including UC, IBD although they often study it in RA patients) can have a number of adverse effects, including those we've talked about frequently on this forum, lupus-like symptoms (which I know you say you don't have), arthralgias, myalgias, neurological effects, demyelination, skin eruptions, etc.). It's a long list, and often hard to diagnose. Rheumatologists need to do a lot of diagnostic labs to rule out various diseases which could be in addition to UC/IBD, or activated by our medications. So it's possible there's an underlying disease that needs treatment aside from your UC. Given that you've had these severe pains for so long (much longer than I did), it seems very reasonable to ask for more thorough diagnostic data so you can be sure you are getting the right treatment. It sounds like the only thing they are doing for you is withdrawing the drug. That may not be enough (even though apparently it worked for some folks), if something else is going on. Prednisone is a good covering drug to address inflammation systemically (although we all know its obvious negatives). I was in such dire straits that I was willing to do it, in addition to stopping remicade. But prednisone can also mask what's going on, so you'd want the diagnostic work by a rheumatologist done first before going on it (if that's what you decide to do). I hope this helps. Hang in there, T....

I don't recall reading the need for Pred. I think everyone just sorta sucked it up (the pain that is) till it went away... The forum was just a bunch of people complaining of the very same thing I was. Word for word in some cases.

Just google "severe joint pain from Remicade"

You can read all about it on a bazillion other forums aside from here. That's what I did when I found the forum and printed it off to show others have this issue. You'll notice people pop up on here a few times a year asking the same thing.

Was thinking about it today - I know I flared badly shortly after stopping Remicade. Back then I would have taken my usual which is a course of Pred and Methotrexate. I can't remember the timeframe between stopping Remicade, flaring and starting Pred but I have a very aggressive case so I can go from doing ok, to laid out in bed with severe inflammation inside of a week or two. It's pretty crazy. So I may have also taken Pred around the time of the pain lessoning. It's worth looking into and asking your GI about. Pred and Metho/Imuran are all immune suppressors so they would help lesson/suppress the reaction as the others mention.

I developed excruciating joint pain from Remicade 5 days after my very first infusion. My pain would always come on in the middle of the night and it migrated to different joints. By morning the pain would dissipate some. It was a 10+ on my pain scale and meds would not relieve it. There was no way I could live with that side effect so I cancelled all future infusions and opted for surgery.

My pain continued at a pretty severe level for a few weeks after that initial infusion. I remember being terrified that it might never go away. However, after a month I could tell things were heading in a positive direction, though I still had some horrible episodes of pain here and there. By eight weeks it was completely gone and has never returned. Since you have been on Remicade a lot longer, perhaps it will just take some more time. Hope you get some relief soon!