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Getting off Remicade

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Ulcerative Colitis
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Posted 9/25/2016 10:13 PM (GMT 0)
Hey ALL!

so I've been on remicade for 3.5 years now, so far everything has been great! however finally caught up to me, started seeing blood in stool something that hasn't happened since i was originally diagnosed, i found out also that remicade is really crushing my liver and enzymes are always pretty HIGH. so I'm thinking along with my doc that I'm getting off it, what other meds do you guys like for UC besides rem? I'm also considering not taking any more meds, its pretty manageable now with the occasional dose of immodium however still some blood too, i know theres humira, simponi, and entiviyo (spelling( i think)
Posted 9/25/2016 10:19 PM (GMT 0)
I'm sorry to hear that remicade stopped working for you. I'm starting it tomorrow for the first time & I'm really nervous.

I know that a little bit of blood can usually be handled with immodium, but don't do it for too long. I did this for a couple of months, ignoring symptoms because I was so busy living my life. Now within a 2 week time span it's all caught up to me. I'm living back at my parents in the worst flare ever! Basically just saying that you should get on a new med asap! Which I'm sure you will :)

To answer your question, you named off all the options I know of that go beyond Remicade. I hope you get to feeling better soon :)
Posted 9/25/2016 10:46 PM (GMT 0)
what is your history ? when were you dx'd and what meds have you used besides the remi ?

is your uc only manageable due to the remi use ?
Posted 9/25/2016 11:33 PM (GMT 0)
[what is your history ? when were you dx'd and what meds have you used besides the remi ?

is your uc only manageable due to the remi use ?""]

ive had colitis for 3.5 years now, diagnosed 3.5 years ago then first quickly put me on asacol which i felt made it worse then put me on remicade with infusions every 8 weeks, body is resistant now

i use no other meds, the UC now has been ok def manageable with caution, have to hit restroom quicker after meals, no urgency tho, its pretty decent with 1 immodium per day although have only been using it probly once a week when i ate too much fats in a meal or something like that or had to many stims
Posted 9/25/2016 11:55 PM (GMT 0)
I don't think that during a flare is the best time to decide to go medication-free, because your flare will likely just get progressively worse as a result. If there is a time you need medications then that time is now. The remicade is likely still working some, and you'll find that out, should you cease it.

I'd recommend you talk with your gastroenterologist to discuss your options. If remicade is causing your bloodwork to be funny, then I'd switch to another biologic, like entyvio. It's a very different medication with a very different mechanism of action.
Posted 9/27/2016 3:52 AM (GMT 0)
^^^ are you on entyvio? I've looked up the side effects but what have you or others noticed?
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