Tapering off Entocort... Question!

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Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 10/15/2009 1:52 PM (GMT -7)   
Hey guys,

I haven't posted here in a while due to real life being super busy (new boyfriend!) and the fact that my computer died. Last week, I started to taper off Entocort due to financial reasons (my Entocort is no longer covered..it will be again soon though, thank goodness) last week. I was on 9 mg for over 6 months, now I'm taking 6 mg, and as I said, I've been on 6 mg for about a week now. One thing that I noticed, however, is that ever since about Tuesday, I've been RIDICULOUSLY tired and my appetite has been huge! Tuesday I could not get out of bed until about 6 pm, and every day since then I've only been able to wake up around noon. I AM anemic, however I don't think that it's the culprit because I had actually had quite a bit of energy prior to this week for quite some time, so I think my anemia may be improving. On top of that, I am REALLY REALLY hungry all the time, like I literally cannot get full. Last night for example, I ate dinner 4 or 5 times, and was still hungry. Is it possible that this could be caused by tapering off Entocort? I'm not sure, because I never had any side effects the whole time I was on it, and you'd think that they would lessen when you reduce your dosage, unless it's some sort of withdrawal symptom. Any insight?

Other than that, I've been doing pretty good. I wasn't doing so well for about a month or so, but I think it was mainly due to stress/anxiety about my new relationship. I lost a bit of weight again (went back down to 90 lbs), I'm back up to 95 now though. Most of my pain is gone, except for a bit of tenderness in the lower right area and a few twinges of pain around my belly button, which I think must be due to the stomach ulcers I had a couple of months ago.

Hope everyone here is doing well!

Regular Member

Date Joined Aug 2009
Total Posts : 90
   Posted 10/15/2009 2:44 PM (GMT -7)   
hey actually i've recently started remicade so the doc is tapering me off entocort as well. Its been about a week on 6mg instead of 9mg and i'm also noticing more fatigue, hemmies and extreme hunger. My bf loves that i'm so hungry again bc i really need to gain some weight back!!! Also the pains but that has been a constant since April. So glad we're both hungry and gaining weight again, its nice to not be alone for this... Hopefully we both continue to have decent withdrawals from the drug. Good luck hun
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin

Regular Member

Date Joined Nov 2008
Total Posts : 348
   Posted 10/15/2009 3:13 PM (GMT -7)   
Weird stuff. 9mg makes me really hungry in the beginning, but I am tired all the time now.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 10/20/2009 1:25 PM (GMT -7)   
Thanks for the responses, funny that you guys seem to be so opposite. I'm really hoping it IS because of the Entocort and not something else, still have 6 days until I see the doctor though... Anyone else have any experiences?
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