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Severe Remicade Reaction?

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Posted 1/7/2012 4:03 PM (GMT 0)
Hi all,

Greetings from UC forum! I'm still trying to figure out what happened to me this week so thought I'd post here for any stories others have. This isn't meant to scare anyone--Remicade can be a wonderful drug. I'm just trying to figure out what happened to me.

Background: On Remicade for Crohn's for 8 months in 2008, lost effectiveness and wanted to study abroad so went on Humira. Flash forward to 12/2011 and I have Pancolitis (UC of entire colon) and very few approaches left, so GI decides to try Remicade again.

Got 1st (re)infusion on December 22 with premeds. No reactions/adverse effects.

On January 2nd began experiencing soreness in shoulder, hip and jain. This progressed over a period of 6 hours until I couldn't move my arms or walk and was frantic and blacking out from the pain.

Admitted to the hospital for most of this week on IV steroids and pain meds. Now on quick prednisone taper. Took 2 days to regain control of arms, moving now but still very weak. Today I woke up and can't walk from pain in ankle joints.

Doctor opinions:

1. UC itself. As many on this board know all too well, joint pain and IBD go hand in hand. I was assumed this was gradual, but he told me it could be very sudden onset.

2. Remicade reaction. Usually, he said, this is accompanied by other issues, not just joint pain and occurs much more quickly after an infusion than my 2 weeks.

3. Remicade induced lupus. I have TNF blocker induced psoriasis from remicade and humira, so this seemed like a possible option.

All I know for sure is Remicade is off the books. Has anyone had anything similar happen??
Posted 1/7/2012 7:25 PM (GMT 0)
I personally have not had a Remicade infusion, but I am due to start Remicade therapy after my surgery in 11 days. (Can you tell I'm anxious?) I wish I could tell you anything or at least something to relate to, but as of today I cannot. What happened to you with the joints shutting down and the blacking out is horrifying! I'm sorry to hear you woke with so much pain in your ankle joints. I can relate to joint pain, it's awful and immobilizing. Do you believe Remicade caused this reaction?
Posted 1/7/2012 7:48 PM (GMT 0)
Hi crohnspt,

I don't want to scare you! The thing about these forums is few ppl with success stories post so you only hear the bad. I do think the remicade caused it but keep in mind this was my 2nd go around and with that comes an increased risk of reaction. I just hadn't heard of a delayed reaction.

Chances are you'll be fine! I had no problem my first time around Let me know how it goes.
Posted 1/7/2012 7:50 PM (GMT 0)
Actually I am getting off Remicade because I had simmilar reactions. Was in the hospital last week and have to get admitted this week to try a new treatment so they can see if I have reactions. The disease its self can cause joint pain but joint pain is also a side affect of the Remi. I have this weird thing when I stand up one side of my face droops, I can't move, can't talk and I grind my teeth for a few minutes then it dissapears. Just like that, in a few seconds. Remicade made it worse I believe.

My GI believes I have several other Autoimmune disorders since I already have Crohn's/JRA and he thinks I may have Remicade induced Lupus(already had symptoms prior to first infusion but this has certainly gotten worse). All of my reactions happened almost 2 weeks after the infuson EVERY time. My GI and several other doctors at the hospital I went to said it is very common for this to happen.

My GI prescribed me Benedryl- 50 mg 3 times a day to see if it would stop the reactions after my last infusion but it only helped some. The reactions still came.

Get well soon!
Posted 1/10/2012 1:00 AM (GMT 0)
Remicade induced lupus is extremely painful. You need to see a rheumatologist and have your ANA tested. When this happened to me the pain jumped from my shoulder (I could't even pour water into the coffee maker) to my knees, then to my thumb joint, etc.. The only thing that helped me was 20 mg pred and methotrexate. I also discontinued the remicade and am now on Humira.

All the best,

Julia
Posted 1/14/2012 8:30 PM (GMT 0)
I too developed remicade induced lupus. The pain is unbearable. My GI totally refused to hear my symptoms so I went to a rheumatologist who diagnosed me. The GI ( who I will never see again) is still in denial. I had to take a medical leave. There are days I cannot dress myself. I had the ANA and the GI infused me THEN told me the results. 6 to 10 months for recovery. It is a nightmare. So do NOT IGNORE THE JOINT PAIN IT WILL ONLY GET WORSE.
Posted 2/2/2012 3:44 PM (GMT 0)
Just wanted to post to let you know I had a resection in 2005 and my Crohn's escalated from there, fistulizing. After the gammit of meds Azacol, Pentasa, Cipro, Flagyl, Predisone....I was put on Remicade and have been in remission since. My immune system has gone on the blink in other ways, but the Crohn's is in check. So pretty much a success story here. Hope this helps. Good luck.
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