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when did you know that remicade no longer worked?

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Crohn's Disease
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Posted 3/7/2011 10:41 PM (GMT 0)
Hi everyone.  it has been a few weeks since i have posted on this board ( I do read it daily).  I have been on remicade (2 time around) since last summer.   Over the last 5 weeks, i have been having more stomach pains, more "D" at times and finally just this past week, several bouts of just feeling really full and bloated.  These have all passed today, but i has me wondering....it the remicade not working?  I do know that my hemoglobin levels are running in the low 10 range.  I do take the max dosage of remicade every 8 weeks.

So my question for those who were on remicade but not now, how did you know it was no longer working?

Thanks in advance for all your support from this site!!

MIROW

Posted 3/8/2011 2:48 AM (GMT 0)

I know because my stomach starts feeling like it's going to flare and get crampy,but then it doesn't, still uncomfortable, but just not real bad crampy stuff. also I know because i have cd issues in mouth and throat, it can be hard to swallow food, it will get stuck in my throat, so when I'm eating and go to swallow, gets stuck,very, very scarry. I had and episode this past end of Oct. piece of burger got so stuck they had to do er endoscopy. But what was the worse part is I started to burp, no air would leave, and yep I vomited right when they wheeled me into room for procedure, and this hunk of meat went flying across room, the scarry part as well, was the piece of meat wasn't a big hunk, shouldn't have gotten stuck if my throat wasn't swollen.

AG

Posted 3/8/2011 3:10 AM (GMT 0)
Besides the return and worsening of all my symptoms, I had an allergic reaction during an infusion and that ended it for me.
Posted 3/8/2011 4:49 AM (GMT 0)
i knew it was no longer working when i had to get doses every 2 months instead of 9-12 months and then needing them sooner than 2 months apart and needing double doses as well.

in hindsight, good things got a lot worse for me cos i then was told i needed a colectomy. it was only that i was desperate enough to truly look into alternative methods and discovered the power of food and diet. i quit remicade, didnt get a colectomy and within a year quit all meds and have felt the best ever.

so am i special case? you never know unless you try it too...
Posted 3/8/2011 5:14 AM (GMT 0)
Ususally it's just a matter of noticing there are no improvements, and sometimes even worsening of your symptoms, After trying for years with prescription medications (that are so strong cause worse issues!), I switched to natural remedies. So far it's worked well for me.
Posted 3/8/2011 12:59 PM (GMT 0)

I took Remicade every 6 months for 6 years, but had to stop taking it because I had an anaphylatic allergic reaction at the last dosing. 

I did notice that between some dosings I would start to feel a little worse (usually losing appetite or energy) in that final month before my next dose. 

Posted 3/8/2011 2:21 PM (GMT 0)

Iwant to commend you guys that can control cd thru diet, but once there is some major surgery involved, diet alone usually won't help, cd will eventually return, and it comes back when least expected. I broke my jaw twice one year, with surgery first time, no wires,they put in plates. then 4 weeks later broke it again, this time opened up same area, removed plates and wired my mouth shut. I had to have resection within 3 weeks of getting my mouth wired shut. I was on no med's with total remission, no sign of cd, until my mouth was wired shut, then whammy, that fast.

AG

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