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Longest time you have been on Pred?

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Posted 8/18/2007 3:58 AM (GMT -8)
Hello all

I seem to have been on pred more often than not since I was diagnosed 7 years ago.  Ive been on it for over 4 years this time and cannot get off it. Its awful and very depressing. My GI is now forcing me to have surgery.

I was wondering whats the longest time others have been on it?  Did you ever manage to come off it? If so, how?

Thanks

Posted 8/18/2007 4:15 AM (GMT -8)
Your GI is "forcing" you to have surgery? I wouldn't let anyone force me to do something I didn't want to. Are you ready for surgery? Have you tried remicade yet? I would consider getting a second opinion.

The longest I was on pred was 8 1/2 months. I had to go on Imuran to get off it.
Posted 8/18/2007 5:55 AM (GMT -8)
Yes, Tried Remicade and it did nothing for me. Hoping to go onto an Abatacept trial this month. Its my last chance for remission i think...
Posted 8/18/2007 6:14 AM (GMT -8)
I was on pred for 3 years with 80mg as my highest dose. This round has been a year with 40 as my high and I'm starting imuran next week because my GI believes I am also steroid dependent.
Posted 8/18/2007 6:35 AM (GMT -8)
Wow, and I thought I was on it a long time. 4 years sounds way too long, you could be doing some serious damage. I've been off and on it for 7/8 years now, but always with some time off, and already I have osteopenia and I'm 22. I would definitely agree that a second opinion is a good idea, no one should force you to do anything you don't want to. Ultimately, it's YOUR decision. You're the one who has to live with it.

The longest I was on was 5 months at 45mg with no taper in sight, so I tapered myself which added another month or two, and then I found a new doctor.
Posted 8/18/2007 8:23 AM (GMT -8)
What about Humira? You might be able to get approved for it since you've already tried Remicade. Maybe you do need your colon removed but I wouldn't let anyone force me to do anything. You are still in control.
Posted 8/18/2007 11:49 AM (GMT -8)

I was on varying doses for 2.5 years before opting for surgery.  Four years is a long time and it is probably time for you to evaluate another course of treatment that includes getting off prednsione for good. 

Sue

Posted 8/18/2007 6:14 PM (GMT -8)
I was on it for 4 1/2 years. Remicade was the only thing that allowed me to completely taper off however I had a flare within one month of being off of steriods. At that point I decided that surgery was my best bet and I am happy with my decision. Steriods are so damaging and awful!
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