Joint Pain while on remicade

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Yazzy
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 1/7/2011 10:02 PM (GMT -6)   
The nurse who does my infusions told me that if I ever have such bad joint pain that I can't get out of bed I needed to head to the ER. I could get out of bed but it would hurt like heck and if I sit on the floor I need help getting up. My wrists, fingers, shoulder, ankles and one knee hurt so bad and I have a low grade fever. My problem is that if I go to the ER they might take me off the Remicade and it is the only thing that works for me. My next step is surgery and I have no insurance so I don't really see that as an option. Any advice?
Diagnosed with ulcerative colitis summer of 2008. I have had symptoms for 10 years.
Last diagnosis was pancolitis and chronic pancreatitis.
Have tried asacol, lialda, steroids, imuran, and currently on Remicade. Started having symptoms 3 weeks before next infusion so the doctor changed it to every 6 weeks.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 704
   Posted 1/8/2011 9:56 AM (GMT -6)   
I had the exact pain you are describing ten days after my first infusion of Remicade. It hurt so much that I cried and I had to crawl around and my husband had to carry me down the stairs. Pain meds did nothing. I had no fever though. My nurse tried to tell me this was a normal side effect. No way could that type of pain be normal and something people would be willing to deal with. So I canceled my next infusion, met with a surgeon, and decided to get a permanent ileostomy. Fortunately, the Remicade pain did subside once the Remicade got out of my system roughly 6 weeks later. My guess is if you are experiencing pain that bad and a fever, Remicade is not a good drug for you to be on. You are probably having some type of reaction to it. It can possibly cause drug-induced Lupus also, which I got tested for but did not have. Everyone is different, some people do great with Remicade, others do not. Yes, surgery and ostomy supplies are pricey, but isn't Remicade pretty expensive too without insurance? My surgery went well except that my incision is still having some healing issues 8 weeks out due to being on Prednisone for so long. Even so, none of the pains I have had with surgery even come close to that excruciating pain from Remicade.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

napacabs
Regular Member


Date Joined Jan 2010
Total Posts : 90
   Posted 1/8/2011 10:45 AM (GMT -6)   
I had a similar experience as well as developed psoriasis while on Remicade. Like you, I am unable to take most of the lower level of UC treatments. You body is likely responding to the mouse antibodies of Remicade, as many people do. You could try Humira which is human-derived. You may not have the same side effects. I started the specific carbohydrate diet and VSL #3 DS as I started my Remicade infusions. I was in remission within weeks. I had to stop the Remicade because of the side effects and had the sense that the diet and probiotics might be enough to keep me in remission (at least I was willing to give it a try). Thankfully, I've been in remission with SCD and VSL#3 for a year.

Postscript: my psoriasis cleared slowly with time after stopping Remicade as have the other side effects.

35 yo male physician/surgeon
Modified specific carbohydrate diet (gluten free, minimal fructose, rice ok, quinoa ok)
VSL#3 DS twice daily with Nancy's organic plain yogurt
Multivitamin (pure-encapsulations 950) Daily

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2732
   Posted 1/8/2011 11:42 AM (GMT -6)   
remi gave me joint pains too but Humira (though it seems ineffective now) so I would definitely try Humira before throwing in the towel.
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb. 
 

Yazzy
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 1/8/2011 3:27 PM (GMT -6)   
Blueheron, yes Remicade is expensive but I qualified to get it free for a year so I am not paying anything out of pocket for it. Today has been a little better, I doubled up on some allergy medicine so I really think it is an allergic reaction.
Diagnosed with ulcerative colitis summer of 2008. I have had symptoms for 10 years.
Last diagnosis was pancolitis and chronic pancreatitis.
Have tried asacol, lialda, steroids, imuran, and currently on Remicade. Started having symptoms 3 weeks before next infusion so the doctor changed it to every 6 weeks.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 1/8/2011 5:57 PM (GMT -6)   
I had the same thing. If it only lasts for a few days, it is probably just a reaction. Mine was lessened each day and gone in about 3 days. I told my doctor about it and he agreed it was a reaction that could be treated with premeds before each infusion. After that I would IV benadryl and prednisone before each IV and I never had a problem again.

Sometimes it can be something more serious so definitely mention it to your GI, but I think the more serious issues last longer and don't clear up in a few days like an infusion reaction.

Humira wasn't nearly as effective for me as Remicade.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.
Previously on Remicade, Humira - No surgeries so far

Meds ~ Sulfasalazine 2/2xday,
Supps ~ Moducare, Jigsaw Probiotics, psylium seed, magnesium, D3, K2, Calcium/Boron, multi-mineral. Modified Fodmap/low fructose/no sugar - Greens & seeds everyday for sterols
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