• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Pentasa Rejection?

Location
Toronto
There's a bit of a story behind this, but I'd rather keep it short. Basically, I was diagnosed with Ulcerative Colitis about 3(?) years ago now. When I was first diagnosed, I was put on Pentasa. It worked great. Cleared everything up. Put me into remission. I was in denial about my condition and stopped using it for about a year. In that time, things got pretty bad. I tried using it again and all I got was a pretty nasty reaction: vomiting, awful cramps and diarrhea. Went to the ER and the doc there brushed me off and told me to take gravol and continue using it. I tried one more time and got the exact same reaction.

My doc put me on Imuran several months ago, and I really feel that its not working for me. I have a bunch of pentasa left from my last prescription, so I decided to give it one more go. The exact same reaction happened minus the cramps.

I honestly don't understand why I'm having such an adverse reaction when it worked beautifully the first time 'round. I was wondering if anyone else has had a similar experience, where it worked great at first but their body later rejected it? Or if anyone has any theories as to what the heck is going on with me?

On a different note I have an appointment with my specialist in a week, and I'm going to talk to her about the Imuran. So hopefully we'll work something out then.
 
I don't know much about it but I do know that I had a friend who told me when I first got diagnosed with Crohn's that she had done research on Pentasa since that is what she takes and it has been known to not work the second time around. She said that if you stop taking it for any reason that it may not be as effective if you try to go back on it. I hope you can find something else that works for you the same way it did.
 
Location
Toronto
I don't know much about it but I do know that I had a friend who told me when I first got diagnosed with Crohn's that she had done research on Pentasa since that is what she takes and it has been known to not work the second time around. She said that if you stop taking it for any reason that it may not be as effective if you try to go back on it. I hope you can find something else that works for you the same way it did.
I wish I had been informed of this when I was first diagnosed :(
 
I don't know much about it so I would definitely do some research if you want more of a concrete answer but I do remember that is what she told me. I definitely understand where you are coming from though. I am about to start Remicade and that will be a lifetime drug for me too if it works because if you stop your body can build antibodies to it and it may not work the second time. I wish the drugs to help treat our diseases weren't like that. Its hard to make a lifetime commitment to a drug especially with the cost of them down here in the states. I really hope the Imuran works for you.
 
Location
Toronto
I don't know much about it so I would definitely do some research if you want more of a concrete answer but I do remember that is what she told me. I definitely understand where you are coming from though. I am about to start Remicade and that will be a lifetime drug for me too if it works because if you stop your body can build antibodies to it and it may not work the second time. I wish the drugs to help treat our diseases weren't like that. Its hard to make a lifetime commitment to a drug especially with the cost of them down here in the states. I really hope the Imuran works for you.

Thanks. I'm really struggling with the Imuran though. Its making me feel absolutely exhausted most days, and occasionally I'm having skin hypersensitivity. I only work part time, but even that is currently a struggle.

I keep getting told that I'm a very mild case, and it's frustrating because if that's true, why is nothing working?

Good luck with the Remicade. I hope it works for you.
 
When I was first diagnosed with uc. (After being told I had piles by two different doctors). I started taking Pentasa.

After about six months I stopped taking pentasa and found the urgency to go was much less and it never helped with my symptoms. Just not the drug for me I suppose.

Im now on my second lot of steroids in six months and started on azathioprene. So far this seems to be much more effective.

That's my story so far.
 
Top