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lowering entrecort enemas brings symptoms

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Ulcerative Colitis
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Posted 3/29/2010 12:15 AM (GMT 0)
HI folks

A quick question. I've been taking entrecort enemas for a WHILE. I'd like to start tapering but whenever I started lowering the dosage, symptoms start to come back again. I was wondering if anyone had any ideas.

Perhaps I need to lower the dosage despite the symptoms, and see if the symptoms calm?

It can't be a good thing to be taking entrecort enemas forever...Im taking two a day. One in the morning and one at night. I've not had any negative side effects to date.

Thanks
EK
Posted 3/29/2010 1:35 AM (GMT 0)
Have you tried the Rowasa enemas? My doc recommends tapering the steroid enemas by replacing them with the rowasa enemas rather than going without anything medicating the bottom....

I was just tapering off the steroid enemas myself, and had gotten down to one a week,then stopped that, and rate, the bleeding started again. So..... sigh. back I go... and I'm calling the GI tomorrow.
Posted 3/29/2010 7:50 AM (GMT 0)
When you were tapering...how were you doing it from two a day?

Is your UC limited or throughout?

Are you on any other meds for UC?

How long exactly have you been using the enemas?

I totally agree about using mesalamine enemas.

q
Posted 3/29/2010 8:28 AM (GMT 0)
Well I tired one, one day, 2 the other- switching between one and two, for one week.

I've had UC for about 4-5 years...or thats how long I've been diagnosed. Initially it was with proctosimoiditis...now its pan colitis, though the inferior part is the area that is most inflamed, it seems, while the upper colon is generally only moderate or mild.

I've been on the SCD which has helped lots too.

I've been using the enema on and off for 2 years at least. And more on than off. Last summer I was almost completely off!!!!

Thanks
EK
Posted 3/29/2010 8:28 AM (GMT 0)
Well I tired one, one day, 2 the other- switching between one and two, for one week.

I've had UC for about 4-5 years...or thats how long I've been diagnosed. Initially it was with proctosimoiditis...now its pan colitis, though the inferior part is the area that is most inflamed, it seems, while the upper colon is generally only moderate or mild.

I've been on the SCD which has helped lots too.

I've been using the enema on and off for 2 years at least. And more on than off. Last summer I was almost completely off!!!!

Thanks
EK
Posted 3/29/2010 8:29 AM (GMT 0)
I'll try the melasamine enemas again... the thing is I had a problem retaining it. Perhaps it will be easier this time....also had the feeling it didn't work that well. Maybe it'll work better this time...
Posted 3/29/2010 1:17 PM (GMT 0)
If you have pan colitis how about adding an oral medication for that higher up inflammation? If it's very mild maybe even just a low dose of an oral would allow you to wean off the enemas to the mesalamine ones. You are right to be concerned those entecort enemas aren't really meant to be a maintenance drug.
Posted 3/29/2010 2:44 PM (GMT 0)
Ugh, do you think that its really bad to be on Entrecort enemas that long? I couldn't find anything else that helped really. I'm trying to lower but what to do....
I'm hoping to lower to one entrecort in one week, and start with the Mesalamine. The only thing is that mesalamine was never easy to keep in. Is that normal?
How do the mesalamine enemas work for you?

Thanks
Emad
Posted 3/29/2010 2:56 PM (GMT 0)
Yeah, I've been on Hycort (steroid) enemas every night now for 3 weeks. Tried to taper last week to every other day but the symptoms returned the next day. So basically I can't taper!
I've got a feeling that the fluid is not being absorbed high enough to deal with the infammation.
I will be seeing my GI on Thursday and I'm going to enquire about Entocort, which I believe is oral but is enteric coated so as to release in the gut. This may address the 'shortcomings' of the enema.
I wonder if he'll have me on BOTH at the same time?
Posted 3/29/2010 8:20 PM (GMT 0)
Mackster

i feel ya. Sometimes I think its a mixture of dietary and medication that can take you out of the flare.
Entrecort is supposed to be better than prednisone.....But I've been taking those enemas forever....even though I don't believe there to be any side effects so far, perhaps there are and I don't know it. hence, trying to get off it asap
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