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Feel like I'm going to be stuck on pred forever

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Ulcerative Colitis
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Posted 3/13/2019 11:57 AM (GMT 0)
Nobody likes being on pred, but 4-months isn't anything to worry about. I did a 12-month course during my worst flare, started at 40mgs, and was on 20mgs about 8-months. Remicade and 6mp finally got me out of the flare and into a sustained remission. Here's hoping he similar humira and 6mp combo will be your ticket to a remission too!
Posted 3/13/2019 12:53 PM (GMT 0)
thanks so much ipoop, that makes me feel better. At the end of the day, there's no point tapering and making my colitis flare at the moment. Hopefully I will be able to tolerate 6mp and the humira will work, if not I will be put on infliximab. I'm just sick of feeling tired and wiped out at the moment and don't really know what causes it. I'm not deficient in anything and my blood tests are generally ok. I thought high doses of steroids were supposed to give you moe energy?!
Posted 3/13/2019 3:14 PM (GMT 0)
Pred side effects are so different person-to-person. Often the energy bursts are at 40-60mgs of pred, but it varies wildly.
Posted 3/13/2019 5:19 PM (GMT 0)
If you're worried about potential long-term damage from pred, you could ask the hospital for a bone density (DEXA) scan. Anyone who is on steroids longer than 3 months is at risk of bone loss, and if it comes back normal it would perhaps put your mind at rest. I unfortunately have a severe case of osteoporosis (Z number -4.8) and although I took pred for many months, the doses were much lower than most people on here (only 3 months above 15 mg).

edited for grammar

Post Edited (poopydoop) : 3/13/2019 11:26:25 AM (GMT-6)

Posted 3/13/2019 5:53 PM (GMT 0)
I'd check after finishing your course of pred. Taking a combined vitamin D and Calcium pill daily, while on pred and doing some light exercise helps mitigate it some.
Posted 3/13/2019 6:29 PM (GMT 0)
Yep I take vitamin d and calcium every day so at least that's something. I think I will ask for the bone scan when I've managed to get off them ... Whenever that is!
Posted 3/13/2019 8:19 PM (GMT 0)
Hang in there! I am on month 5 of pred and have a DEXA scan scheduled for June. My goal is to be off pred entirely by the end of the month, but we shall see how that goes. I am down to 10 mg after failing to taper below 30 twice!
Posted 3/13/2019 10:07 PM (GMT 0)
I took vitamin d and calcium every day and still got osteoporosis sad maybe i am just odd....
Posted 3/13/2019 10:23 PM (GMT 0)
Some react more strongly than others. It's why there's no hard-and-fast rule on what longterm usage of pred means.
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