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PLEASE HELP, Was given to much Remicade and I hurt bad.

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Crohn's Disease
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Posted 6/25/2014 1:05 AM (GMT 0)
Two weeks ago I went for my infusion, on it for over 6 years, no side effects. Had colonoscopy April 25th, came back no cancers and inactive crohn's. The Dr. and I decided to wean me off due to my energy level and I was feeling great and for two years no flare ups, complete remission. I go for treatment and the most I have ever took was 400mg we got started husband noticed large bag and asked how much, she replied 500 mg we told her I had never had that much, she said it was Dr.s order. so they put it in me, I got sick the minute I stood up and have been sick since. My back hurts so bad I can not sit up straight, I have chronic constipation to where I sit on commode and cry with belly cramps, My entire lower half of my body is so sore I can't stand any thing. Am not eating, but swollen to where I look pregnant. Have been to Dr.s 3 times and on phones. They say take miral lax, now I am up to drinking Magnesium Citrate, the stuff before a colonoscopy. Can to much Remecade do this ? They did say my max amount was 465mg per body weight and I had been given 500mg. But they say I have a virus, this and that and none of it makes since. Has anyone else had this and what happened ? I hurt so bad I am ready to take myself to hospital. I have a DR appt. again next tuesday. PLEASE, HELP !!!!! Thank YOU !!!!
Posted 6/25/2014 3:14 AM (GMT 0)
So it's usually 5 mg/kg of weight or 10 mg/kg. I'm a little confused because 500 mg would mean that you weigh either 100 kg or 50 kg. So yes, it can fluctuate based on weight - how much do you weigh, and what is your dose per kg of weight usually? Honestly, I don't think it should make you that sick, but I'm not sure.
Posted 6/25/2014 5:39 AM (GMT 0)
I'm 6' 4" 220 or so. Not sure how that figures into what you got, but I started off a 500mg, which should have roughly worked out to 5mg/kg. After a while, I was bumped up to 1000mg, or 10mg/kg.
It never caused me any pain.

Might just be a coincidence.

I hope you feel better.
Posted 6/25/2014 1:12 PM (GMT 0)
Thanks for the help, that is what I thought, it has messed with my stools. I am so constipated I have to take laxitives and then wait a day. done got scared to eat and don't, but instead of loosing weight I am gaining due to swelling. I was just fine, in complete remission being weaned off, which meant I should have been given less then more. I have been up and down all night running to bathroom with nothing but terrible gas but yet it feels like a stooly, then nothing. Everyday I hurt somewhere new, but constantly in my guts. I also am red in my face this morning as if I am sun burned, have not been out side, to sick. I am scared, I am hoping it will just go away. I also have a real bad burning in my stomach. My back hurts real bad, at the belt line, more to the right around into stomach. I don't understand it. The Dr.s say I might have gotten a virus in the hosp., but I should be over any virus by now. I never did more then 400mg, they started me at 250. I don't understand how they figure it only by bodyweight, and they did not weigh me and it was laying on the table ready to go when I got there. Please, help me in anyway you can. I don't know, maybe I am just freaking out and am thinking all this. But it sure hurts, feels like I am pooing rocks, I always had Diarehea when I would go in a flare up. This is new. Have a nice day,, cry
Posted 6/25/2014 1:30 PM (GMT 0)
Not sure why they didn't weigh you. I am not sure we CAN do much more to help you. I would suggest calling the Remicade manufacturers themselves to see. Then if you're still in pain and feel you need to go to the er, then go.
Posted 6/26/2014 7:53 PM (GMT 0)
Doesn't sound like Remi to me. My daughter was on 10mgs per kilo when they reintroduced it ,and she had 4 of those doses in 6 weeks. Her levels were off the charts,literally. Her reaction was a rash, which was unique. It had a half life of 7 weeks at that rate, then gone.
Get your stool tested, you might have picked up something. Minimally, you can test for Remi levels, which will also test for antibodies to the drug.
Posted 6/27/2014 3:31 AM (GMT 0)
Unless your weight wildly fluctuates a huge amount, weighting you each time isn't necessary and isn't going to make a difference.

I agree, doesn't sound like the Remicade.
Posted 6/27/2014 7:52 PM (GMT 0)
when i started remicade again a few months ago i got some of what you mention: constipation, aches and pains, etc. it turned out to be just a shift in my body's normal rhythms, so the anti-diarrheal i'd been taking was too much, and when i stopped taking it i went into withdrawal. once my body leveled out at its new normal i felt much better.


are/were you taking any other meds? have you made any changes?
Posted 7/2/2014 1:11 PM (GMT 0)
Thanks everyone for your help. The Dr.s did say I got to much for my bodyweight. The constipation is/was because my colon and intestines went into shock and I had almost a complete blockage in my righ side, but due to me taking the laxitives, they chipped away at it. I am feeling much better now. It was definitely to much Remicade and I reacted to it like this, because I do not need it right now and they gave me to much so I couldn't handle it. They flushed me with 40 mg Laiex everyday, so I am peeing a lot to. So it is weakening on me now. But when I go for the rest of these treatments it is gonna be like when I started, weigh me and then mix accordingly. No pre mixing at all. I still feel like I got someone else's meds, but main thing is I am getting better and it did not screw up my remission. If anything it kind of help prove I don't need it and am in remission. I truly appreciate all your help and PRAY you all get better and live pain free. I strongly believe in the Power of Prayer and will keep you in mine. May you be happy and GOD be good to you. Thanks, Angel.
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