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Have been in remission...but think those days are gone.

J

jackie7w

Hello everyone! My story is so similar to many - misdiagnosed for about 15 years with IBS until finally diagnosed about 7 years ago with Crohn's. 2 small bowel resections, lots of hospitalizations as well for obstructions, etc. Remicade finally threw me into remission and after a year decided to stop taking it. I have been kidding myself the last few months that the "signs" do not mean I am coming out of remission...am tired, barely can make it to the bathroom at times, then days of constipation, tired....tired....HORRIBLE hemorrhoids that burn, itch and are increasing in size daily. Also having off and on stabbing pains in my stomach....ugh. SO...have broken down and made an appt with my regular doc to discuss, as well as have made an appt with GI doc, but it is not for two months (unless it is an emergency, it takes a bit to get in). I am sure that she will tell me to ask for a quicker appt with GI. Here is my question.....anyone out there that has gone into remission, gone off of one of the immunosuppresants, been okay for a bit and then have to start back up again? I am mostly curious about how quickly it worked for you again. My doc told me as much that I would probably be started on Humira since Remicade tends to not work as well if you go off of it. (he was not thrilled I didn't stay on the meds two years ago)...would love to hear your experiences...NO fussing at me for going off my meds! LOL :ybiggrin:
 
Artisan105

Artisan105

Yondaime
Hello :]

I am on Remicade every 2 months also taking Asacol (no longer Pentasa) 2 tabs daily. And that is it. If my Crohn's was still not under control I am sure my doctor would have given me Humira.

I am not sure nor heard of anyone completely off of immune-suppresant drugs. :[ Maybe the dosage is lowered or maybe the frequency is changed when ones health is better. But not sure about that.

Good luck!
 
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