Things to look out for when on Remicade?

[lenny]

My son has had some toe pain for a couple of days (occasional stabbing pain, seems pretty mild, but he says ouch and he doesn't say ouch for a needle stick) I googled and see that some people have so much joint pain from Remicade that they can't walk downstairs..yet they continue to get infusions. The pain is seen as acceptable. Okay, well I hope that doesn't happen to my son.

Should he be seeing a rheumatologist? Sometimes his back hurts.

A couple of weeks ago he said he had dark urine for a day or 2. He told his doctor..it went away. Maybe he just didn't drink enough?

I'm starting to worry a lot and I'd just like someone to tell me what exactly I should be paying attention to and looking out for. I don't want to miss a warning sign only to have his suffer more damage.

Thank you so much!

 

[Clash]

Are you thinking his back and toe pain is related to remicade? Or did the back pain start before he had remicade.

Since joint pain is a common extra intestinal manifestation(EIM) of CD it is often necessary to see a rheumatologist who is familiar with CD and it's EIMs. Some joint EIMs run concurrent with active disease (CD flares) while other run independent of CD flares.

 

[ronroush7]

I would have him see a rheumatologist

 

[my little penguin]

Don't google
Remicade is used to treat joint pain and damage in JIA and JSPA
JSPA goes along with crohns
A Rheumo can help you sort it out
No need to look for issues
If there are issues you will already know it's an issue

 

[Maya142]

I agree - if he continues to have joint pain, I'd see a rheumatologist.

 

[malorymug]

My boy had some joint pain and headaches for the first few months on Remicade. Just as we were getting ready to see a rheumy and Neuro, the complaints went away. Now, 16 months into Remicade we have no complaints.

Hope the joint pain is short lived for your son.

 

[CrohnsKidMom]

My son actually has no joint pain now that he is on remicade. He did have fairly frequent ankle and heel pain while on methotrexate as a monotherapy.
Hope the issue resolves soon for your boy!

 

[lenny]

Don't google
Remicade is used to treat joint pain and damage in JIA and JSPA
JSPA goes along with crohns
A Rheumo can help you sort it out
No need to look for issues
If there are issues you will already know it's an issue

Google has actually been super helpful. It diagnosed him before his doctor did. And it led me here.

 

[lenny]

A couple of hours ago, son told me that his arm suddenly felt sore, "like after a rough blood draw, bruised feeling..worse if I touch it." It's been 8 days since he's had any blood taken. I'll be calling the doctor in the morning..just thought maybe someone here might know something.

His arm looks totally normal, but it's sore from wrist to elbow. Just one arm.

Thanks!

 

[JaimeM]

I have sacroiliitis.. I have always had a lot of problems with it when on remicade.. The cimzia either helped it a lot or the remicade makes it worse. Not sure.. But it seems like its much worse the few weeks after remicade.

 

[ronroush7]

I have sacroiliitis.. I have always had a lot of problems with it when on remicade.. The cimzia either helped it a lot or the remicade makes it worse. Not sure.. But it seems like its much worse the few weeks after remicade.

Have you notified the doctor?

 

[JaimeM]

They sent me to a rheumatologist when I was on remicade the first time.. all my joint pain was much better while on cimzia.. It just started my last loading dose of remicade (my next dose is my first normal one) So i'm giving it time to see if it settles down or if it continues after my next infusion

 

[CarolinAlaska]

Watch for redness and hard lumps in the veins. J gets thrombophlebitis after IVs.