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Going from Remicade and Imuran to other medicaton?

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Ulcerative Colitis
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Posted 1/8/2010 3:40 AM (GMT 0)
Hi! I am wondering if it is possible to go back to the "first meds" once you are stable and well on Imuran or Remicade or both? For example, when I got diagnosed last spring no medication would work to put me into remission, I tried 5 asas and other stuff and It didnt help me. No medication worked until my 4th dose of remicade and a month on imuran. Now that I gained a lot of weight and that I am stable, is it possible to try the 5 asas again??? Anyone have been put on a less intense medication after a while of doing well?

Thanks for your inputs

Posted 1/8/2010 1:32 PM (GMT 0)
We had a member on here that did just that. She quit Remicade and went to Lialda. She was doing well when she transferred over to the 5-ASA and I believe she just recently went thru a minor flare. I haven't talked to her a little while so I am not sure of her status right now but it did seem to work for her a bit anyway.
Posted 1/8/2010 4:43 PM (GMT 0)
I had a very clear colonoscopy in August and my doctor said I could start weaning off of the Remi and try 12 week intervals. If that doesn't seem to cause a problem, we'll then move down to Imuran, and then the Lialda. So, I suggest talking to your doctor about this; but remember, I did have a colonoscopy that showed no ulcers or polyps. I also have no symptoms at this time, so I'll start the weaning soon. The crazy part is that I'm actually a little bit hesitant to stop the Remi because I have felt so well for so long! I just don't want to go back to the flaring stage.
Posted 1/8/2010 5:25 PM (GMT 0)
     I thought Remicade was a life long thing.  Of course I just started it in November, but my doctor never mentioned about how long I would have to be on it.  It would be wonderful if only a few treatments would get one into remission forever...wishful thinking huhrolleyes
Posted 1/8/2010 5:26 PM (GMT 0)
I was on Remi about six years ago. I went into full remission after 3 infusions and there was no sign of anything. I stayed on Imuran and Asacol, but went off the Remicade. I remained in Remission for 4 years. Then a little over a year ago I went into the worst flare ever, which brought me to the brink of surgery.

The only thing that brought me out of my flare was the Remicade, which I've been back on (at a higher dose) for a year. I'm not sure if it was the extended time off of the Remicade that caused me to flare or not. I would love to try again, but I've been told that it's not recommended to go off and on that drug. It worked for me once, but I don't want to flare like that again if I can help it!

I would also like to hear from others who have done it successfully (or not), or who have spoken to their doctor about it.
Posted 1/8/2010 7:56 PM (GMT 0)
GI's don't really know what will work for us. They try these meds and hope they work. They know there's a chance they won't so, if not, they try something else.

I used just every FDA approved med except Humira. I used Remicade for a several infusions years ago and started Imuran and went into remission. I stopped the Remicade and continued Imuran and after doing well for 2-3 years on Imuran my GI lowered the Imuran and I flared 6 months later. My GI said I could have flared even without lowering the Imuran; "that's how unpredictable this diesease is" he said. He's proabaly right.

After a stint in the hospital I am now up even higher on Imuran and taking Remicade again and getting better. I'll probably stop the Remicade as I did years ago and ease back (a little more carefully) on the Imuran even later than that.

GI's chase this disease with the available drugs they have. We in here try some of the other (supplements/diet/herbs) that others have said helped them in order to see if we can fix things ourselves.

Remicade can be stopped and restarted and it is not the last drug before surgery. Neither is Imuran. Newer drugs are also being developed and will be approved in a few years.

This time I'm going to (hopefully) go into full remission again and keep myself there using more probiotics (VSL#3DS) and Rowasa (which I've used many times in the past but never at the very first sign of diarrhea or mucus).

I've talked to several GI's and, aside from surgery, this is the way things are done.
Posted 1/8/2010 11:08 PM (GMT 0)
I would like to know the same thing.  My GI said you shouldn't go off the remicade because your body will build up antibodies against it more easily then it would if you stay on it.  I've been having issues lately and I don't want surgery but nothing seems to help.  I was fine with the remi and now I have more urgency and I'm going alot more.  I hate UC.mad
Posted 1/9/2010 2:35 AM (GMT 0)
thanks a lot for your posts! It is so interesting and gives me hope that one day ill be on maybe 5 asa s only... you neve know! I feel so weird with remi and imuran, almost as if it was too strong ... I am prtty much always constipated :S I am gaining so much weight... but its hard to tell what frequency is normal for us after a very severe flare ..I feel so bloated and HUGE. blah!
Posted 1/10/2010 1:43 PM (GMT 0)
When I was initially diagnosed almost two years ago, it took a few months to get under control. I initially was put on Lialda, Azathioprine, and Prednisone. This wasn't working fast enough, so my GI switched me to Remicade and took me off of Aza. After about 5 infusions, all was well enough that he took me off of Remicade and put me back on Azathioprine which I have been using with great results ever since. So I would definitely say the answer is "yes".
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