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I have been taking Remicade for years. At first it was getting th...

Posted at 8:35 PM on Feb 04, 2008 by jbill, #26910
I have been taking Remicade for years. At first it was getting the job done. I started having severe pain that seemed to migrate to different places in my body. Sometimes the bottom of my feet would get so tender I could barely walk. My finger would bend while sleeping and I could not straighten it for days and it would hurt real bad. Knees and ankles would do the same things and then move onto other parts of my body. I thought it was more of a tendon problem, but the pain could also be in any random spots on my body, like shins or maybe a random place on my back. My wrists seem to be a favorite place too. The pain can set in fast and sometimes leave fast. Prednisone is the only thing that seems to help these symptoms. I have been taking 5mg a day for years and when I am having problems that is not enough. I went to a Rheumatologist and he says it is not the Remicade but another antimmune problem. My family doctor thinks it is a side affect of the Remicade and I tend to agree with him. I am going to have my damaged [due to NSAIDS drugs] pouch removed in hopes of getting off all medications. I have been living with a colostomy bag for the past three years and it is the least of my problems. Before that I had all my large intestines removed and a pouch which worked well for approx 15 years. I am one of the early people to receive that kind of surgery. I can only pray for all of you that are suffering and lend hopeful advise to your journey.
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Reply 10 months ago on Feb 05, 2008 by luigi, #4601

WHENEVER I READ THIS STOREIS IT MAKES MY BLOOD BOIL.. I HAVE BEEN SUFFERING THE SAME PAIN FOR 3 YEARS.. NOTHING MAKES IT GO AWAY.. FINALLY A FEW DOCS HAVE ADMITTED THAT IT HAS TO BE A SIDE EFFECT OF THE REMICADE AS THERE IS NOTHING LIKE THIS HORRIBLE PAIN IN THE BOOKS! I STOPPED THE REMICADE 2 YEARS AGO & THE PAIN IS JUST AWFUL , JUST AS YOU DESCRIBED.. MY LIFE , IF YOU CAN CALL IT THAT IS SHEER HELL. HOW I WISH THAT I COULD TURN BACK THE HANDS OF TIME AND NEVER HAVE HAD A DROP OF REMICADE. GOOD LUCK TO YOU ( I CURRENTLY AM TRYING PLAQUENIL, NSAIDS AND 2MG PRDISONE.. NO IMPROVEMENT YET)

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Reply 5 months ago on Jun 08, 2008 by athornton, #9038

Sorry for your pain but glad to hear someone else has this same pain that I am having thought i was going crazy I have been on remicade for 3 or so years and this pain in my joints , back all over is killing me but my stomach dr seems to think I am crazy , I am printing your posting to show him others than me have this problems please let me know if you change meds and if they work I am thinking about asking to go on humira???

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Reply 5 months ago on Jul 02, 2008 by cathyxiii, #9737

GET YOU RECORDS AND COMPARE THE BLOOD WORK PRE AND POST REMICADE. LOOK AT THE SED RATE AND C-REACTIVE PROTEIN... I AM WILLING TO BET THEY WERE GREATLY ELEVATED AFTER THE INFUSIONS. THE REMICADE BASICALLY TRIGGERED AN AUTOIMMUNE REACTION OF WHICH IT IS SUPPOSED TO BE HELPING ACCORDING TO THE DRUG MAKER..CENTOCOR. i AM WILLING TO BET THAT YOU CBC WAS OFF AS WELL. THIS A DANGEROUS DRUG. THE PHYSICIANS ARE SUPPOSED TO REPORT THE SIDE EFFECTS TO THE FDA VIA MEDWATCH. YOU CAN GO TO THE WEBSITE AND REPORT THE SIDE EFFECTS YOURSELF.

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