Crohn's in terminal illegal, diagnosed in 2011 and been through Pentasa and one other 5-ASA, Entocort, Imuran (allergic reaction) with no success in achieving remission. GI just put me on Remicade and actual infusion went OK except for some fatigue for a few hours after. But, about 10 days later I started getting numbness in my right foot. Nerve pain and numbness that got so bad I could barely walk. Called GI and they said not a reaction to Remi so go ahead with second infusion and talk to Primary physician about nerve pain. Went ahead with second infusion and had no change in nerve pain, so went to Primary Dr. Blood work done and said my B12 was not too low but it could be problem. Three weeks and three B12 shots later there is some slight improvement in foot but still painful. Now at night I also between up with my hands aching with pins and needles. Overall just tired, aches in muscles and sometimes night sweats or chills, no fever. Third infusion scheduled in two weeks but after reading Remicade literature and some posts here I'm even more convinced this is a reaction to drug. Appointment with GI next week to discuss but I'm stuck in bad situation. I wasn't this drug to work because nothing else s and I'm running out of non surgical options. But this pain is more detrimental to my quality of life than Crohn's pain was, and I fear the nerves might be permanently damaged. Does anyone have any advice or experience with this same symptom? Looking for hope that somehow this nerve damage pain will go away if I either stop Remicade or my body adjusts. I know I still can try Humara if I can't tolerate Remicade but also scared that this foot pain won't go away even if I stop. Any help or similar experiences appreciated. Thanks.
Remicade side effect?
- Thread starter novax67
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fuzzy butterfly
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Hi I was on remicade for a while, it did nothing for my crohn's,if anything made mine worse and ended up with surgery. i can't remember any foot pain as such but had pin's n needles now n then ! It could well be a side effect that affects you so mention it at your appointment, but be firm about it as some times doc's can be dimissive about things that matter to you, half of the time it's because they dont realise how much it affects/worries or hurts you,so let them know in no uncertain terms how you feel. Best wishes n hope it can be resolved quickly..
Hello. Usually Doctor expect that if you are going to have a reaction, it happens in the next 24 hours after infusion,(acute reaction). There are delayed infusion reactions, that occur up to 14 days after: arthralgia, influenza-like symptoms, tiredness etc. Your nerve pain may or may not be a side effect or reaction, but it needs to be taken seriously and find the cause for it. Can you ask to be refer to an specialist? maybe a Neurologist. I am no expert. This is just my opinion. Good luck.
