How long will Remicaide joint pain last?

Hey everyone. I believe this is my first time posting, and looking for help from the community.

My wife was diagnosed with UC a year ago in July. She was in and out of the hospital for 2 weeks while they tried steroids and other medications. Ultimately they decided to try Remicaide and that appeared to work great.

Two nasty side effects though.
1) She's prone to infections, and antibiotics appear to trigger UC flares.
2) Worst though is joint pain, and that's what I want to know more about.

The joint pain started when she was a couple weeks away from her 3rd infusion of Remicaide. It comes 6-7 weeks after every transfusion without fail. The day after her transfusion, she feels almost 100% fine. We are utterly convinced it's withdrawal symptoms from the Remicaide. Docs keep suggesting it's other things and even tested her for Rheumatoid Arthritis - and she tested negative.

The joint pain is so bad she cries when she tries to roll over in bed. The joint pain also moves around. It might be in her arm/shoulder one day, then her knee/leg the next day.

She moved her infusions up repeatedly, and the GI increased the dose last time. But joint pain came back as strong as ever after 6-7 weeks. Seeing an RA doctor - they now want to put her on a chemo drug to counteract the "RA" like symptoms, but she doesn't want to chase her tail with more and more drugs and is preparing to just go off remicaide. We're not really sure if that means her UC will come raging back. So we have a bunch of questions we're hoping the community can help us with. As an aside, I'm very disappointed in the doctors thus far. It's like their throwing darts, and don't believe what their patients are going through half the time.

Questions:
1) How long after quitting Remicaide will the joint pain (withdrawal) last?

2) What alternatives to Remicaide should we investigate? Basic steroids didn't seem to work.

3) She's tried all kinds of diet stuff and even taken up running (did her first half marathon 14 months after diagnosed with UC), still can't completely pinpoint what affects her the most, any further nutrition advice?

4) Any similar sufferers figure something out that helped with any of this?

Thanks so much for your help.

Oh yeah.. and some people (myself included) as per our GI's decision have added Methotrexate or Immuran along with the the Remicade with some success as well in preventing this reaction. My pain eventually started when I stopped taking Methotrexate along with Remicade.

It's something else she could ask her GI about. But it does add more meds this way though.

Sorry, no aches. I just wanted to agree with you on the doctor situatuion. I always wanted my doc to say, "here's the problem and here's how we're gonna fix it." I never got any of that. Instead, he told me to look online and find what worked for other people (diet, supplements, meds). He said each person responds differently and that I should see what works for me. It was very frustrating, but he was totally right. So many people on this forum have all sorts of weird diets and supplements. My weird diet is... Don't eat beans or cereal (fiber). Besides that, just Remicade.

I hope things improve for your wife. Find out what works for her and stick with it.

Thanks for the feedback. We're going to ask our doctor about Solumedrol, and Methotrexate. Someone else mentioned Czimia? So we're going to ask about that as well.

With Remicaide she was doing great for almost a year, and was thinking because she couldn't handle the joint pain (it can be REALLY bad) she was going to go off of it. However, just yesterday she had frequent bathroom trips and had a small amount of blood. So she feels like her UC is reminding her that it's still there and that she better not think about getting off meds....

Not to steal your thread bojamba, but I was wondering how strong of a dosage everyone is getting currently for their Remicade infusions. I just had my 2nd infusion a week ago, 2 weeks after my first one. My 3rd one will be 4 weeks from my 2nd one, pretty standard extension between them. My first 3 infusions are at 10mg/kg. My GI said I will then wait between 6-8 weeks for my 4th one and have it dropped to 5mg/kg. Reading this has me a little concerned that by the time my 4th one comes around I will start having some joint pains. I am also taking 40mg of Prednisone a day and 100mg of Azathioprine a day.

I have yet to feel any joint pain since I got out of the hospital from my initial diagnosis and when I started the Remicade my family told me it was almost a night and day difference in the way I looked the following day. I have heard it is not a good idea to stop Remicade, because your body can then build up a resistance to it and if you try to go back on it, it will not be effective. Can anyone back me up on that?

Anywho, I guess I will just have to wait and see how I do the first time I have to wait 8 weeks and am on the lower dosage of 5mg/kg.

Thanks for posting about this bojamba, this is some good information to have.

Yeah I'm starting to get the exact same. GI thinks its all colitis induced and lack of swelling is actually a good sign