UC/Remicade/Joint Pain

Joint pain is unfortunately one of the side problems associated with UC. I was on Remicade for about a year and I noticed my joints ached more while I was on it. I have read others say that too who have been on Remicade. Hope your GI has some ideas for you to get some relief. My pain wasn't too bad...more bothersome than unbearable.

I had that exact thing! It came on roughly 5 days after my very first infusion. It was hands-down the most excruciating thing I have ever experienced... and I have had broken bones, kidney stones and major surgery when my entire colon was removed. None of those things touched the pain I experienced from Remicade. It was 10++++ on the pain scale.

It was exactly as you describe. I first felt it in my lower back but each night it would come on in a different joint. Knees, ankles, fingers, hips... all of them had their turn. It felt like someone was stabbing me in those joints with a knife or even crushing them. The pain was so bad that it made me cry out loud and writhe around on the floor. I couldn't walk when it was at its worst and my hubby had to carry me downstairs in the morning to sit me in a chair.

Like you, it was the worst at night. In fact, I could almost set my alarm by it. Every night between 1 and 2 a.m. it would start. My husband and I would say the Remicade bogeyman was coming to get me. By 8 a.m. the pain would lessen and then just ache the rest of the day. Then at 1 a.m. it would start all over again... usually in a different joint.

My doctors tried to tell me that joint pain was somewhat normal with Remicade and they wanted me to go in for my second infusion. However, there was no way that what I was experiencing could be normal. I had absolutely no interest in putting any more of the drug in my system so I cancelled my second infusion. My body clearly did not like the drug and I saw it as a major red flag. I was incredibly worried that the pain might be permanent but it slowly went away over the course of about a month once the Remicade left my system. I ended up choosing to have permanent ileostomy surgery a short time later.

I know the pain wasn't caused by prednisone. Not only had I never experienced joint pain from that drug before, but I was still on prednisone when the pain disappeared once the Remicade left my system. I also knew the pain wasn't from UC. I had never had any joint pain associated with UC in my ten year history with the disease. Not to mention that the onset and end of the pain directly coincided with when I started and stopped Remicade.

Anyway, the whole experience was pretty traumatic for me. Listen to your body and be persistent with your doctors if you are worried about the drug. It doesn't seem like this severe joint pain side effect is all that common or known. If Remicade was indeed causing this pain for you, the last thing you would want is for your doctors to think it is arthritis and then give you even more Remicade to treat it.

about 2 weeks ago, I woke in the middle of the night with EXTREME pain in both my ankles and feet (had started with pain in right calf the night before). The best way to describe it was like both my feet were in a vice and someone kept tightening it over and over... It hurt in the muscles, the joints and right down deep into the bone!!!

I did not think I could even walk to the car to get driven to the hospital. NO idea what it was .. lasted several hours (sore for longer but not that extreme level). I did go to the ER as it truly worried me.

After ruling out injury, Deep vein thrombosis and circulation problems I was sent home with pain killers and no explanation. 3 different docs could not explain it despite me giving a few possible causes...

Here are the possibilities I thought of but still don't know for sure.

a) REMICADE! - I was day 3 of receiving my 2nd dose (both a week early and as a double 10mg/ dose). I get another double dose this coming Friday so we will see if pain re-occurs... if so, than that's the culprit.

b) Prednisone! - I was on day 2 of 50mg oral after having been on solumedrol IV 60mg for 18 days. Body processes oral and IV differently according to my GI.

c) I was 12 hours release from a 19 day hospital stay for extreme flare and had not been very active physically so my muscles and joints may have just been screaming at me...

d) I had added a bunch of new supplements (Iron, Calcium, Vit D.)

If this happens again with my next dose of Remicade I'll update and let you know. I really hope it doesn't but if so I have those pain killers at the ready this time!