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Worried about going off Imuran

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Ulcerative Colitis
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Posted 12/11/2020 1:16 PM (GMT -7)
Hey there,

My doctor wants to take me off Imuran as I've been on it for almost three years and have been in remission about a year and half now. It appears it's the Inflectra which has been doing the trick. My Inflectra levels are at about 16 which is great and I have no antibodies. At this point, she believes it's best to come off Imuran as long-term use is not great.

Has anyone had a similar experience? I don't want to come off Imuran and go into a crazy flare. But when we checked my Imuran (not Inflectra) levels, they were far below what they should be, leaving us to question if the Imuran is even doing anything anyways.

Thanks,
David
Posted 12/11/2020 3:36 PM (GMT -7)
David, by chance were you on Imuran before Inflectra? You say the Inflectra has put you in remission & your Imuran levels are low that would indicate to me that you would be ok going off of it. A lot of drs do not like to have their patients on it long term & will take them off. I know it makes you nervous because you are doing so well, totally understand that.

Good luck with whatever you & the dr decide.
Posted 12/11/2020 5:38 PM (GMT -7)
You can slowly taper off of imuran over 6 months or more. If things get worse then increase the dose again. Not sure your pill dosage, but you can drop by 1/2 a pill at a time, as an example.
Posted 12/12/2020 3:08 AM (GMT -7)
Exactly, if it's the inflectra that brought you into remission, it's not a bad idea to try coming off the imuran, although i can understand your anxiety in doing so.
Posted 12/14/2020 10:32 AM (GMT -7)
Thanks everyone. Yes I was on Imuran before Inflectra and it did nothing. I was in a flare when I started it and not until I tried Humira did my flare stop. And they've just kept me on Imuran this whole time. I think I want to try getting off it.

Do we know if Imuran is something that is tapered or do we just come off it cold turkey? I'm on 175mg so a pretty high dosage.

Thanks.
D
Posted 12/14/2020 1:04 PM (GMT -7)
Not sure. I stopped it cold turkey because I started xeljanz and it's not allowed to take them together. Maybe ipoop has experience of this with infliximab/remicade?
Posted 12/15/2020 8:38 AM (GMT -7)
As an addendum, my doc says Imuran you can just come off. I'm of course going to take that into consideration but also curious how others (those who took Imuran) came off it. She wants me on "Infliximab monotherapy" so nix everything else I'm taking, because I'm doing and have been, doing well!
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