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Crohn's Disease
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Posted 9/18/2008 10:06 PM (GMT 0)
So at what point do you go off of medication. Tyabri has kept me in remission but at what point if ever can I go off of tysabri?
Posted 9/18/2008 10:45 PM (GMT 0)
Good question, and one that has crossed my mind, but I don't know the answer....
Sorry.
Posted 9/18/2008 11:26 PM (GMT 0)
I was under the impression that you had to stay on medication for life. I know I will anyway. It just depends on which medication it is I suppose..
Posted 9/19/2008 1:21 AM (GMT 0)
I'm currently in the "process" of abandoning western medicine, but I think if you want to get technical about it - western medicine abandoned me. Remicade, after years of being my wonder drug, has stopped working. I have refused my Humira. It was a HUGE decision not to continue the Humira, and a scary one. Part of me is terrified of not having a "back up" medication plan, but I just can't do it anymore.

So, at what point do you go off of medication? A.) when the med decides it doesn't like you anymore, or B.) when YOU decide, for better or worse, that you won't take the med anymore. I wish I had a nicer answer, but that's the view from where I'm sittin'.

P.S- I'm having success with a gluten-free diet, and I do take probiotics and digestive enzymes. I'm hoping that those, along with quitting smoking and healthier daily habits will do the trick. We'll see soon enough!
Posted 9/19/2008 1:44 AM (GMT 0)
I was under the impression that Tysabri, like the other biologics, is a maintenance system. It treats you while in therapy, but once off, your body could go back to the situation before. I suppose it's all chance, though. You know the history of your disease. If it's been constant, then I would imagine it will attack again. If you've had periods of remission without meds, maybe you will hold the remission for a while.

Personally, I am considering a "drug holiday" due to the nature of Tysabri... It's never put me in complete remission, so...
Posted 9/19/2008 11:19 AM (GMT 0)
meds for life
Posted 9/19/2008 11:32 AM (GMT 0)
At my last GI appt, we discussed the possibility of my going off Humira next year. He mentioned that some new research data are showing that this is feasible. Humira is my only crohn's med, other than B12 shots and vitamins.

On an aside, I've been known to stop my meds for periods of time. The longest I went was 6 months without sx returning. I think some people can pull it off. I don't recommend doing it yourself though :)
Posted 9/19/2008 4:31 PM (GMT 0)
I tried weaning myself, very slowly off Azathioprine. It didn't last long! By the time I managed to cut down from 3 pills to one, I was beginning to flare. Went right back on and doubt I'll look back.
Posted 9/19/2008 7:37 PM (GMT 0)
I have seen so many people say they went off meds while feeling well then ended up with obstructions and surgeries because damage was being done even they felt fine. I agree with MMMNAVY MEds for life.... Karen
Posted 9/19/2008 10:08 PM (GMT 0)
Meds for life here too.
Posted 9/19/2008 10:33 PM (GMT 0)
I agree meds for life, but sometimes you can switch to a milder drug to maintain remission. I maintained on 6mp for several years, but then dropped down to just Pentasa and was still able to maintain remission. (of course I am abandoning my own advice and am off the Pentasa to breastfeed knowing that it may mean another layer of scar tissue to once and for all close my ileum)
Posted 9/20/2008 12:15 AM (GMT 0)
Yeh, meds for life for me also :(
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