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what is remission really? what is good enough?

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Crohn's Disease
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Posted 10/11/2010 9:10 AM (GMT -7)
So I am down to 5mg of prednisone (which I really, really, really, want to get off because I am tired of the weight gain and insomnia). Last time I saw my GI I was on 15mg and he said that if I was going to flare back up it would probably be on 15 or 10mg and if my symptoms came back he wanted me to go back up to 20mg and taper more slowly...and then if that didn't work to go on remicade I think. 15 and 10mg went just fine. I am now on 5mg and feeling pretty good - a couple minor twinges of pain during the day, but 90% of the time I feel good. My daily morning D is back (as it always was before), and I am a bit more tired, but the rest of the day goes okay. So, I guess my question is - am I "good enough" to get off the prednisone? As long as I am feeling relatively okay - or is the expectation that I be totally symptom free?
I don't see my GI again until Oct 21st when I have a colonoscopy.
I don't want to totally flare back up, but I don't know that going back up on the prednisone is worth it either...
????
Posted 10/11/2010 9:49 AM (GMT -7)
tough question and truthfully one I have had myself. I dont have answers for you- just wanted you to know I read your post and understand the question. I guess overall it is about how you feel- can you function? If my crohns is active I am pretty much out of commission... even when it is only a little bit- because I get worse quickly and it is a slippery slope if it is not under control... and so I would think the dr needs to know your D is back and you are again tired and maybe the rem. is the next step for you. Or maybe u should taper to 2.5 for the next dosage? However if u feel well.... isn't it up to you? Good question- best of luck working it out- I think it is something we all question from time to time. At least I have. Maybe a call tot he dr's office would be worth a try.

B
Posted 10/11/2010 11:10 AM (GMT -7)
Sometimes when I go down on my Pred, I will actually have a few rougher days till my body adjusts to the lower dose. I would give it sometime and see how you do. If you continue to feel REALLY bad, then I would suggest you then go back up on the Pred. Hugs!
Posted 10/11/2010 1:23 PM (GMT -7)
He wants you to go cold turkey off the pred with no maintenance med? Not even Pentasa?
Posted 10/11/2010 5:00 PM (GMT -7)
man if i were you I'd start exclusively drinking an elemental formula (peptamen OS by nestle), it's been shown to be as effect as prednisone in crohn's, maybe you could get off of it then
Posted 10/12/2010 12:04 PM (GMT -7)
When I am good I am not "normal" people good.

I still go 4 or more trips to the toilet, I still can't eat breakfast, My joints hurt, I am tired and nauseas.

But I am in remission according to my doc.
So I think we will never be 100 % good.
But IBD good that is something we can be :P

Good luck loosing the pred.
Posted 10/12/2010 1:05 PM (GMT -7)
I have asked myself that a few times lately. I have been in what I would call remission for a while now, but my CD is creeping back up on me and really taking a toll - particularly on my energy levels. I know my symptoms have been a whole lot worse - so while I am not 100% satisfied with my current situation I definitely won't go back on Prednisone. I wouldn't touch it again unless I was admitted in the E/R.

The pred made my CD symptoms better for a while, but I had horrible side effects - huge weight gain, insomnia, personality/mood changes. My current GI also thinks that the cycling of the steroid was what accelerated my need for surgery because it caused the scar tissue to accumulate faster (inflaming/healing/inflaming/healing), leading to the lovely stricture I had removed back in 2005.

It is tough to get off steroids without having some degree of uptick in symptoms.

Good luck!
Posted 10/12/2010 8:46 PM (GMT -7)
yes, "IBD good" - I'm going to go with that. I am feeling well enough right now - definitely better than when I originally went on the pred! I will ask my GI what to do next at my colonoscopy next week. In the meantime, 2 more days of pred!!!
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