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Entocort suddenly quit working?

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Ulcerative Colitis
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Posted 6/8/2015 4:13 PM (GMT 0)
Hi all,

My doc put me on Entocort a few months ago and for the first few weeks, I got as close as I've ever gotten to full remission. Still going 7-8 times a day urgently, but after going 20 times a day with lots of blood and pain, that's a big improvement.
It worked very well on my GI symptoms for 2 weeks, but I was having crazy side effects - worse than prednisone side effects. Headaches, rapid heart rate, insomnia, increased appetite, moon face, cystic acne, and the worst fatigue and joint pain I've ever had.
I decreased my Entocort dosage from 6 mg to 3 mg to see if I could cut down on the side effects and my GI symptoms were back within a week. But when I went back up to 6 mg of Entocort, it no longer helped with my GI symptoms.

Has anyone experienced this before? Or does anyone have any idea what may have caused this to happen.

I was so excited that after 3 years of nonstop flaring I might get some relief from Entocort, but now it's looking like that's not the case.
Posted 6/8/2015 4:20 PM (GMT 0)
your body was used to that entocort dosage of 6 mg and when you dropped, your body said "that's not enough." by the time you upped it again, it sounds like it was too late. this is VERY common on steroids.

your maintenance medication (what is it?) obviously is not working. you can't be on entocort forever. it's usually used for mild-moderate flares instead of prednisone.
Posted 6/8/2015 5:37 PM (GMT 0)
I agree with banangirl and, yup, I've had that happen to me with Uceris. I was taking it with great results and eventually my flare up surpassed the capabilities of the Uceris. That's the best I can describe it anyway. I had to take pred and had awful side effects, moon face, pizza face!!! ugh. I hate this illness.
Posted 6/8/2015 5:57 PM (GMT 0)
Yep. Ditto banana and notso. That's why I highly encourage those on meds with less side effects not to cut back too much or eliminate them altogether, because many times they just don't work the same when you go back up on the dosage again. Too many people get cocky and think that they can cut their meds out entirely when they're doing better, thinking if they get worse all they have to do is take the drug again and it winds up not working. Unfortunately, with steroids, you can't be on them long term so eventually you would have had to get off of it anyway.
Posted 6/8/2015 6:59 PM (GMT 0)
I wouldn't say suddenly, but it did quit over a very short time period for me. It's a shame to because it's effect the first time I took it were incredible.

I've wondered if it would be any better if I go back on since I've been off a few years now---or if it's just completely ineffectual in cases like this no matter how much time elapses.
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