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Starting to worry....

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Ulcerative Colitis
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Posted 8/7/2009 7:34 PM (GMT 0)
Hi everyone...

  I'm starting to get worried.... I was doing the taper off Prednisone and got down to 30mg and had some symptoms return... (pain, cramping, frequency) so I called my GI and he said to go back up to 35mg for a week then taper down 5mg a week... I'm getting nervous because I've been on steroids now for almost 2 months and with this slow taper I'll be on them for at least 6 more weeks.. I'm worried mainly about bone loss, and if I can't get off steroids.. I guess Remicade is my next step...   Just don't want to ruin my body and I'm only 45 years old....

        

Posted 8/7/2009 7:38 PM (GMT 0)
If you want to get off the pred, I'd definitely talk with your doctor about Remicade. I've heard from many people it put them into remission after one or two infusions, so then you'd be able to taper as fast as is safe for your body and not worry about UC symptoms coming back.
Posted 8/7/2009 8:48 PM (GMT 0)
I understand your worries, I was on pred for three months. It was not lovely but it did FINALLY get me out of a horrilbe flare that lasted almost a year. That was a year ago and so far I have not had another flare that bad that I had to take pred again.

I think that you are probably okay as long as you continue to tapper after you go back up to 35mg. I had to go up and down several times before getting off the pred completely. Take a mulit-vitamin and do weight bering exercise to help combat bone loss. Really all women should do that regardless of UC.
Posted 8/8/2009 3:47 AM (GMT 0)

Thanks guys...   Ya, I'm probably extra emotional anyhow from the prednisone so that makes me worry even more than usual... lol...  I'm just gonna try and do that slower taper and NOT worry. It is what it is and at least I have NO blood, and my poopies are back to normal and only 1 to 3 a day.. I still have a LITTLE bit of cramping, but it's getting better..LOL But, I am eating a lot more due to the pred though and the moonface is unbelievable and I have a little hunchback AND a BELLY AND I've gained about 7 pounds!! OMG....  At least my husband assures me that he loves me even though I look like the pilsbury doughboy, and I feel now that he really does.. He's been incredibly supportive lately not letting me do to much.. but letting me do what I want.. He's seeing what I go through now and I think it has changed him.. for the better thank GOD...  Wow.. the font just changed while I was typing this and got way smaller.. interesting.. must be my computer....  Or it's the pred freaking me out... lolol..

Posted 8/8/2009 4:09 AM (GMT 0)
I'm jealous lol...I've been on 40mg for 6 weeks now..and I've been on them since December just not that high a dose, before I got upped to 40mg I was tapering at a rate of like 4-6 weeks depending on how I was doing, so your taper rate is actually pretty good!

Bone loss shouldn't be a problem if you're only on them short term is what my doc says. I feel your pain about the moon face. I didn't get it until 2 weeks ago, but it came on fast. Good luck and I hope your symptoms don't come back when you taper! I know its discouraging. And once you get to 10mg my doc says the side effects decease dramatically...keep positive!
Posted 8/9/2009 1:10 AM (GMT 0)
When I was on pred I acted so out of it... most people thought I was high... I didn't get moody, I got hyper and giggly.. that I didn't even know I was fat lol.

I think as long as you're tapering you'll be alright. =)
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