Joint Stiffness

Morning joint stiffness could also be tied to RA

Haley, joint pain is often associated with these medications. I had joint pain on both Remicade & Humira. Call your dr if it concerns you enough. I would not be worrying about RA at the moment.

Did you just have an infusion a few weeks ago? Swelling and joint stiffness could be a reaction to Remicade and you might want to ask for your anti-bodies to be checked to rule it out.

Oh one other thing I thought of.
I was on budesonide for a long time. I was on it from July of last year up until maybe a month ago when I finally got my infusions to every 4 weeks.
Can being on it that long cause any issues?

That’s really interesting! I was never on the name brand Remicade, only Inflectra. I highly doubt my insurance will let me have Remicade over Inflectra unfortunately.
I did send my doctor a portal message a little while ago just to get his thoughts.

Okay, just heard back from my doctor.
He thinks it could be a side effect from Inflectra, but since Inflectra in controlling my UC so well he doesn’t want to make any changes yet.
He said he can prescribe Sulfasalazine if I think I need/want to try it.
He does not think it’s related to antibodies just based on the what I’ve described and since otherwise I’m symptom free. We did an antibody test in January and I didn’t have any. I was just on the lower level infliximab levels and that’s when we switched to every 4 weeks infusions.
He said if the pain were to get really bad we would look into other causes.

Does this sound right to those if you with experience with this? He hasn’t steered me wrong yet since I’ve been seeing him, but want to make sure I shouldn’t be pushing for testing or something further.

HaleyA said...

So you had joint pain right after and right before? And you did have antibodies? Was that your only symptom of them?

10 years ago when I experienced this, most insurance companies would not cover Remicade antibodies tests so I was never tested. The most pain that I had was during the infusions. When I stopped anti-tnf meds then I went away a few months later.

HaleyA,

I developed pretty severe knee pain/stiffness after my Remicade infusions. It started right after my 1st infusion and is ongoing. I have been on Remicade since 2015. I have severe allergic reactions to meds so we have been reluctant to change anything. I was diagnosed with "Crohn's arthritis and osteoarthritis" in 2015. My knees are bone on bone. I have had 0 antibodies and still had pain. I have had antibodies of 14 and had pain. So unsure if antibodies made a difference for me. The pain is worse 48 hours after the infusion and gradually gets better the further away from the infusion date. Immediately after my infusion I am ok- (hobbling, using a walker but ok) but they think that was because I received the IV benedryl and steroid premeds. 48 hours later my knees hurt even if I am sitting down. They gradually improve some. By the 6 week mark I am just starting to feel better, by the 8 week mark it is much better.

IMO... I would keep track of it and if it bothers you discuss it with your GI. Your GI will probably refer you to a rheumatologist. They'll take x-rays and see what's going on. I usually tried to see if there was a pattern and waited a time or two just to be sure. Now I wonder if it would have been easier to go in sooner. The rheumatologist gave me some pain relieving creme and there are knee injections that help other people.

I don't know if additional testing before your infusion would make a difference. I do think that, just to be safe, x-rays to check for knee damage might be helpful. I just unsure if the timing...ie, before or after infusion, would make a difference.

For me the pain is worth my UC/Crohn's being partially under control. I have an appointment with 2 docs. regarding a knee tap and shots later in the summer.

Hang in there,
Clo

Yeah I think I worry this is something that will make me stop taking Inflectra and it’s working so well for my UC symptoms.
I also worry about the pain getting worse, during one bad UC flare I had horrible joint pain I could barely walk until the flare was over. This pain is different tho so that’s why it has me kind of confused I think. During previous flares I would get joint pain but it was very achy feeling. This is so much stiffness in my knees especially when getting up in the morning and when getting up from sitting.
Just so strange to me.

And I agree, Clo. I would take this pain over UC issues, I just worry if it’s something that’s going to get worse and if I should be doing something about it.

I will talk both of your advice and monitor it for now