remicade and bad joint pain

 

  Hello Everybody,

  I haven't been on in a while. I had a question. I started to have joint pain prior to going on remicade last May.

The remicade worked both for my U/C and joint issues. However, at the 6 week mark of the remicade infussion my joint -

 knees, hands, hips, feet start to really bother me. I have been to a sports med doctor for this issue. I was put on a few different non steriod/nicodic meds. Honestly they dont help much.

   Is anyone suffering like me with remicade and if so what do you take for the pain?

Thank you so much in advance or any answers

 

I've had similar problems, honestly when it starts happening I take Ibuprofen, not much maybe 200mg once or twice a day provided I have no bowel issues and my joint pain is gone. It did seem to get better as time has gone on with the Remicade.

Hi Jovi,

It's probably a different situation for me than yourself as it sounds like you had joint pain to begin with, but I wanted to type this out and comment on my experience just in case others search this in the future.

After about 2 years on remicade I awoke one morning (the fifth week) with and "odd" stiffness in my neck. Then the next morning, my foot, toes, etc. It was very intense and I had trouble just walking. I hung in there for a week till my infusion and sitting in the chair during the infusion the joint pain pretty much went away by the time it was done.

The next week - the exact same thing happened around the fifth week again - But 10X worse. I could barely walk, the pain traveled to different joints each day. It was intense. Sometimes I could only just lay there in bed as any movement would be just crazy painful. Same thing though... I tough it out to the infusion and the pain goes way.

Both my GI, doctor and the Remicade nurse said it sounds like I have developed rheumatoid arthritis, as they all said people with Crohn's or UC have a very high chance of this... They scheduled me for blood tests for rheumatoid arthritis. All came back negative but they still all insisted this is what it was and booked me to see a rheumatologist.

Honestly I didn't believe them. Something was up.

I googled "remicade and severe joint pain" one day and the first thread that popped up was a bunch of people experiencing this same or very similar thing, same frustrations, and same intense pain.

I printed it off, took it to my GI and said I wanted to try this blood test form Prometheus to see if I was building up antibodies to the remicade. He said he has never hear of this, nor the test for this and so on... Eventually I had to force him as he has to order the kit but he still held firm to "it's nothing more than arthritis". It's very common. Remi nurse said the same thing.

Anyway - while I waited for my GI to get the paper work and order the prometheus test, things just got worse...

I stopped my remicade on my own as the pain was that intense... - and I made an appointment with a new GI at the very same time...

about 2 weeks after not showing up for my last infusion -all pain went away and it's never come back to date since. about 14 weeks later I get a call from my original GI saying there's a time limit on the test and if you stop the infusions then they cannot tell for sure.... I told him the pain is already gone - and thanks for not helping/listening/reading... have a nice life etc... And that I won't be paying for the invoice for the blood test. He should have ordered it right away as I requested.

My new GI (who's awesome) immediately said in Canada docs won't do this test because it's not covered. I volunteered to pay for it myself which is why my old GI ordered it in the first place. And he said most don't even know it's available. The Remi nurse said she never heard of it (which I highly doubt) as well. He said usually protocol is to increase the frequency from say every 6 weeks to every 4 weeks to overcome the antibodies and see how things go and if it gets worse, then stop. Regardless, he agreed it was a good idea to stop since all joint pain was gone as well as a few other side effects.

The down side is that I never did take the actual blood test because the time frame had passed due to my old GI. So as my new GI pointed out we can never know for 100% sure... but it seems to him I had built up a resistance to it and that I should consider other options like Humira.

I'd keep an eye on things and if they get worse mention the tests etc to your GI and google remicade and joint pain.

It's pretty sad when we as patients have to do all this homework...


Hope you feel better soon.

I had terrible joint pains clearly from Remicade that forced me to stop that drug, esp as a test showed some elevated antibodies in conjunction with that Remi-induced pain. I was switched to Humira, but eventually started to react to that too, then went into a remission for almost a year after stopping humira, which coincided with my starting LDN. Currently trying Imuran in combo with LDN, and various natural therapies, probiotics, acupuncture and diet.