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Whats the longest you've been on prednisone?

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Posted 4/15/2013 11:06 PM (GMT 0)
2 years. From my first and only flare to just before my surgery.
Posted 6/9/2013 2:24 PM (GMT 0)
I know I'm late, replying but I've been on 40 mg Pred since April 27th. No side effects bad enough to mention. I've only gained back the weight I'd lost, mainly because I'm not running to the bathroom anymore!
Still not "normal" though, have pain and urgency but just in the morning.

Just started Imuran yesterday and when that starts to kick in I'll be tapering the Pred. I also took 20mg in October 2012 for a month with the same results, better but not completely. I didn't even taper off then, just stopped and still, no side effects.
Posted 6/9/2013 3:17 PM (GMT 0)
4 years -not a happy time!
Posted 6/9/2013 4:39 PM (GMT 0)

colitis91895 said...
My longest has been to around 4 months. My worst side effects were weight gain, stretch marks( which i still have) and the moon face. I gained around 40 pounds on prednisone.

How about you?[/quote
Years.... cant seem to get off of it. I wane between 10 & 15mg...At 5 mg I start to flare then I have to increase and the cycle repeats shakehead

Posted 6/9/2013 4:42 PM (GMT 0)

mom2panda said...
2 years. From my first and only flare to just before my surgery.

You tried the FT i saw. Can you email me please? I have a question

thank u
Posted 6/9/2013 7:00 PM (GMT 0)
BeatUC - wow - 4 years! At what dose? Is it the only med that works for you?
Posted 6/9/2013 8:39 PM (GMT 0)
I've been on it in varying doses for 14 months. I was at 60mg for several months, then tapered down slowly over several months. I got down to 7 where I stayed for a few months, I tried to go down to five but the bleeding started up again. After being on 7 for a while, and seeing the end of prednisone in sight, I started another flare and had to go back up to 20.

I tried entecourt but it made my D worse. My body wasn't holding onto anything for several weeks (liquids or solids) and I had to be taken off of it.

I am now on 6mp with the goal of hopefully getting of the prednisone.
Posted 6/9/2013 8:54 PM (GMT 0)
the dose varied, but not less than 20 mg and up to 60mg before going on IV steroids. Not fun, but it saved my colon!
Posted 6/9/2013 8:58 PM (GMT 0)
8 months, gained 50 lbs and took me a few years to lose the weight. I got really depressed and insomnia with I have dealt with since then. My stretch marks are fading and still have a couple more pounds to lose. I refuse to ever go on it or anything like it again. Hope your experience is better than mine.
Posted 6/9/2013 9:05 PM (GMT 0)
4 months during last year.

It got me out of a flare. It was rough at times as it make me short tempered. But what else can you do? Pred is the only thing that has got me OUT OF a flare.

So for me it has been a necessary evil.
Posted 6/9/2013 9:55 PM (GMT 0)
1st time - 8 months - became steroid dependent (symptoms return when off)

2nd time - right now 2 1/2 month tapering at 25mg from 60mg - now considered steroid refratory (does nothing for my colitis... ) -

good news is... will likely never have to go back on since it's proven not to work for me..
Bad news is.... one less drug in my arsenal to fight this disease with..

My side effects suck but were manageable and acceptable if it had been helpful drug for me!!!! (insomnia, weight gain, energy, night sweats , fatigue, facial hair, loss of head hair, moon face, bit more sensitive emotionally.. )
Posted 6/10/2013 12:46 PM (GMT 0)
I'm up to 5 months on pred now. Starting a taper later today, and depending on the pace it could be another 6 weeks before I am off it (or more).
Posted 6/10/2013 4:04 PM (GMT 0)
I've been on it nonstop for a little over a year now. I actually started in Jan 2012 and was off for a month in April 2012, back on May 2012.  I'm now down to 6mg.  I actually didn't have many side effects once I got to 20mg, other than the moon face and I have gained 10 lbs. Also got cellulite and stretch marks in odd places.  Some of the weight is starting to come off. But the worst part is that once I got below 7mg my hair started falling out in clumps and my scalp feels like its on fire.  I already had very thin hair (possibly thinning due to 10+ years of mesalamine use, but nobody knows). So now it is getting so thin I am wondering if I'm going to need a wig :(  It's very, very depressing and on top of just hoping I stay in remission I now have to worry about looking like I'm a chemo patient everyday.  I am NEVER going on this drug again.
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