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Has anyone experienced the low percentage side effect of arthalgia pain after taking Remicade? I'm 1.5 week post 1st infusion for the second time, first time was prior to colectomy/j-pouch and didn't work. I didn't experience this the first time, but I woke up in a world hurt this morning and almost fell down getting out of bed. My hands, fingers, knuckles, shoulders, neck, back, hips, and knees are in so much pain and my knuckles are starting to swell. Any help would greatly be appreciated. Thank y'all in advance.

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I had a very bad reaction to Remicade that sent me to the emergency room.  When I actually had the infusion, I experienced back pain, which had never happened previously.  Later in the day, I had severe upper back and shoulder pain.  I was unable to move my arms to even feed myself.  The pain was excruciating and I had to be carried out on a board in an ambulance.  After an overnight hospital stay along with meds, including Tramadol I was okay.  My GI insisted it wasn't a reaction to Remicade but did have me take Benedryl with my next infusion.

I've been on Remicade every six weeks for over a year, and while I deal with significant joint pain, it is no worse than before starting Remicade. I have enteropathic arthritis. Part of the infusion protocol I get includes IV Solu-Medrol (steroid) and an oral antihistamine (Claritin for me because I drive myself and Benadryl is too sedating) as pre-meds. These are for preventing side effects, but I think it is mostly for immediate infusion reactions, but maybe it helps with delayed reactions too. Do you get premeds with your infusions?

Jan

 

Yeah that's what I've been reading. My GI's office finally got back to me late yesterday and their response was from a covering doctor as that mine is on vacation for 3 weeks. He wanted me to stop Remicade and go to the ER immediately. Well, I'm now feeling much better after not going in and I'm wondering if it was merely coincidental now. My body has always acted weird with different treatments, so who knows. Really don't want to not get my next infusion in case it was a coincidence, but if it happens again I'll have my answer. The GI keeps trying to tell me if Remicade fails he's going to recommend surgery and I'll more than likely lose my pouch which is the furthest from what I want.

Well, if you do want to continue with the Remicade (if the on call doc didn't already discontinue it), be sure your regular dos is aware (so maybe the dose can be adjusted or the pre med). Also, don't plan any trips or unusuL activity in the following couple of weeks.

I can understand why you'd want to give it another go. Just be aware that repeated exposure to an allergen can induce a more severe reaction each time you are exposed. Stock up on Benadryl!

Good luck!

Jan

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