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Whoa.. Wait a minute

I've been diagnosed for about a year and have been on prednisone for most of that time. I finally tried remicade and weened off preds.

Now here I am two weeks off prednisone and I'm suddenly getting symptoms I have not had before. I mean, I've had cramps and an urgency to go before but now it's WAY more intense! When I have to go.. I had better go to a toilet or I'm making a mess. Furthermore, the pain Ive been getting today is unreal. It's killing me. And it doesn't relate to an urgency to go. It's just intense pain in my gut.

Is this what Crohns is really like?

Is it like this all the time or is what you would call a flare?

Has anyone else only been able to use prednisone? How else did you cope?

I can't believe how confused I am after a year of this.
 

my little penguin

Moderator
Staff member
How many infusions of remicade have you had ?
Sometimes it can take 6-8 weeks after starting remicade to get it built up.
Once the remicade kicks you things will get better
Can you try EEN (exclusive enteral nutrition ) - no foods ?
This can be as effective as steriods but no side effects until the remicade builds up more .
Also how far apart are you infusions /dosage?
Ds never made it to every 8 weeks .
He had to switch to 7.5 mg/kg every 6 weeks to get relief.


Good luck
 
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