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Ulcerative Colitis
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Posted 1/20/2020 5:20 PM (GMT -5)
I have had Ulcerative Colitis (pancolitis) for almost 6 years. I went on Remicade a little over 3 years ago, and I feel like it saved my life. I have been experiencing a great deal of pain in my joints for the last 3-4 months. The pain seems to get better the further away from an infusion i am, as the drug levels decline in my system. The pain is very, very debilitating and intense. I have 2 small kids and an extremely demanding job; this much pain is really affecting my life. (I also have terrible headaches) My Dr. wanted to switch me to Entyvio because he thought my reaction was certainly to the Remicade, but he did a Remi antibody test first (Prometheus). The test came back today showing no antibodies to the drug. Had a colonoscopy last week showing a beautiful colon! Others have suggested that this sounds like drug-induced Lupus. Has anyone had a systemic reaction to Remicade that did NOT show antibodies to the Remicade? I am very torn on what the next step should be. Please help by providing advice if you can!
Posted 1/21/2020 9:42 AM (GMT -5)
It is possible that the reaction is unrelated to the Remicade, and should you stop that the joint pains might continue. As UC patients, we're more prone to having joint pains even without any medications. These are known as extra-intestinal manifestations (EIMs) of UC, joint aches/pains and rashes are the most common ones. We already know our immune systems are crazy, as they attack our intestines relentlessly, at times our immune system can grow bored and attack other things. A good read on it:

https://site.crohnscolitisfoundation.org/resources/arthritis.html

It is possible to get a secondary immune condition over time, such as an Rheumatoid Arthritis. It cannot hurt to see a rheumatologist and see if you have a positive ANA for it.

Odds are less of Remicade causing it, as you have no antibodies against it. Antibodies make joint aches, rashes, flu like temps and other side effects the most likely.

Round about way of saying, eliminate other possibilities before ceasing a medication that is working for you.
Posted 1/21/2020 12:00 PM (GMT -5)
Remicade gave me awful joint pain, but unfortunately, I never got antibody testing so I can't answer your question from my personal experience. I was a nonresponder - antibody testing wouldn't have helped me much. I tried a double dose after the original dosing didn't work, and I still had zero response. It was as if they were infusing saline into me but it caused terrible joint pain in the middle of the night. I had an ANA test done at that time, and it was positive, so I think it was related to drug-induced lupus. I wish I had done the antibody test. It would have been interesting to know the result.
Posted 1/21/2020 12:07 PM (GMT -5)
I never had my levels checked because it wasn't covered by my Insurance at the time. My GI called it serum sickness and it kept getting worse the longer I stayed on it.

I went to Humira, Simponi and then Cimzia which are all Anti-tnf biologicals. I had the same reaction to each of them and I couldn't have had antibodies to them because I wasn't on them long enough. It happened almost right away.

Entyvio wasn't available at the time. It's probably a good call to move on to a non-anti-tnf drug.

I had no lasting side effects but it did take a few months to go away after I discontinued the anti-tnfs.
Posted 1/21/2020 5:31 PM (GMT -5)
If you do a site search (top right) for Remicade and joint pain, you'll get a lot of older threads about the subject - it seems to be quite a common problem with the biologics.

One ex poster on here took sulfasalazine for her joint pain, which she said got rid of it almost completely. Aside from a small possibility of an allergic reaction (which I got, but I am intolerant to all mesalazines), it's about as benign a med as you can get. Before you move onto the big guns of methotrexate, other biologics, etc. I'd at least consider sulfasalazine. But deffo get a consult with a rheumatologist as well.
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