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Why do I feel this way? Is it right??????

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Ulcerative Colitis
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Posted 7/7/2008 4:53 PM (GMT -5)
I am now tapering off Prednisone.  I started it about 6/9 and the mg. was 20mg's.  Last thursday my doc started me tapering first with 15mg, then I'll go to 10mg, and then 5.  But for now I am only a few days on 15 and already I am starting to feel as things are slowly swelling up again.  I am feeling little cramps and I am getting a bit more gassy(for a better choice of words).  Is this something I should go to my doc about?  I don't want to play wolf and then have him feel that I am a cry baby.  With all of this so new I am not sure what to complain about and what not to complain about. 
Posted 7/7/2008 5:05 PM (GMT -5)
I've been trying to taper off Prednisone for a year-and-a-half. Every time I get to the lower doses (usually under 10mg), I flare again. I call my GI's office all the time - his assistant and I know each other's voices now and if I leave a message, she calls me ASAP. ;) My GI had me tapering up this time until I got to 15mg, which did the trick after almost a two-month flare. He's got me tapering down from there by 2.5mg every couple of weeks with instructions to call his office and report how I'm doing. I may have to go on 6-MP again, but I've been taken off of that a couple of times as it lowers my white blood cell count. I'm nowhere near wanting to go the surgery route, so the next step may be remicade if the Prednisone and possibly 6-MP don't work. He won't keep me on Prednisone too much longer, and I want off of it, anyway! I would call your GI's office with any changes and see what they say. You're the only one who really knows how you feel!
Posted 7/7/2008 5:09 PM (GMT -5)
That has happened to me while trying to taper off Prednisone. I usually get gassy then things settle down a bit. It isn't meant for long-term use so your doc might have to find a medication for your maintenance. I've been through all of them and Remicade seems to be the one that works for me. I still need Prednisone here and there but not for more than a few weeks at a time. Yes, I would talk to your doc and at least let him/her know you are feeling like things are getting stirred up again. If you catch it early it's usually a little easier to nip it, at least it is with me.
Posted 7/7/2008 5:35 PM (GMT -5)
That's what pred does, it's not a maintenance drug, as soon as you tapper low enough symptoms will re-appear unless you're on a maintenance drug that has kicked in.

:)
Posted 7/7/2008 5:54 PM (GMT -5)
Definitely talk to your doc.

Have you considered Imuran or 6-MP since you can't use the 5ASAs? What about supplements?
Posted 7/7/2008 10:10 PM (GMT -5)

I experience this return of symptoms and I think that others have experienced it also.  As I recall, I read someone else's posting of this effect when I was having the same problem as you which made me feel better and taught me to wait a day or two when I started feeling bad - but don't wait too long - I made that mistake once...and only once as I ended up more sick than I had been in almost a month.

I FINALLY am totally off prednisone without having to go on any stronger drugs!!  yeah I had been on it starting the end of Nov 08 and just got off it last week.  My hubby figured out that within 3-5 days of dropping my pred dose I would have one really bad day, cramps, gas, d, headache, exhaustion, etc.  He's so smart.  cool   Once I made it through that bad day or day and 1/2, I was good to go. 

I did have to go on Xifaxin to make the drop from 20mg-15mg and I'm pretty sure I was still on it for the drop to 10mg but I made the drops from 7.5 to 0 with no Xifaxin.  I also discovered (as have many others) that exhausting myself would make me sick again.  I had to go from 2.5 back up to 5 because I exhausted myself and started bleeding again so I now stay very aware of my current state of exhaustion (I love my weekend naps!!!).

Don't wait to call the doctor.  That's what they're there for.  Even if it's just to tell them you're not feeling well, give them your symptoms, and see if they recommend that you up your dosages, add a new drug, or just hang out and wait to see what happens.  You may also want to make sure that you're eating foods that won't irritate your colon which will help it to heal as you reduce your steroid dose.

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