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Discussion Starter · #1 ·
I am back on entocort, for the 4th time in 3 years. It stops my ibs-d when I am on it, although it takes several weeks to kick in. Has anyone else had this experience? This time I am on a full 2 months of full dosage, then to taper for a number of weeks.
 

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Yes, I've been on it. This is my second time. Apparently, it was first used successfully with IBDs, then they did some successful trials with Microscopic Colitis (collagenous/lymphocytic C.). I've not seen any info about it with IBS, but I don't see why it shouldn't be tried if you're unresponsive to OTC and Prescription meds. Being a corticosteroid there are risks, its low, but real. Its still much, much safer than Predisone. [Edit: I should add that ideally, they use a course(s) of Entocort in the hopes of achieving a remission that 'sticks' after withdrawal. Hence the pulse treatment approach.]I've had Dx'ed microscopic colitis for nearly 11 years now. Bloating/gas, nausea, abdominal pains, big time D.Just tried Entocort for the first time in late 2009. The GI prescribed a tapering 4 month course, which I stretched to 6 months. Within 24 hours of starting the drug I saw/felt results. I felt great while on it, even at the minimum 3mg dose 1x a day. Sadly, within a few weeks of ceasing treatment all my symptoms came back. No worse than before, but its very frustrating.Now I'm seeing (yet again) a new GI. He put me back on Entocort starting at 9mg 1x a day. He has said that he'd like to find the minimum effective dose and keep me on it long term, like a maintenance drug, instead of the pulse treatment that its commonly used as. I've read that some folks have been on a continuous low dose for years, yes, years, with no ill effects.The only side effects I ever experienced were a slight facial flush after dosing, and some 'steroid mania', both of which subsided within the first two weeks. I would advise you to take them first thing in the morning, or whenever you start your day. Otherwise they can effect your getting to sleep.My experience with Entocort is here, if you're curious. Some great info links are posted by Kathleen and Elizabeth, some studies I found about Entocort, and a link to a site I found that focuses on MC. They had/have some good info/experience with Entocort and were a bit of an inspiration for me to push this GI to consider long term dosing.Lymphocytic Colitis and Budesonide (Entocort) - Results?
 

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Discussion Starter · #3 ·
My experiences with entocort have been similar to Cheshire Kat's. I've had over 3 years now of liquid urgent daily D, and no sign of inflammation or paratites etc. Entocort stops the symptoms, but they always come back full force after tapering off the medication. Interestingly, I have no microscopic colitis like Cheshire Kat, but the entocort works. I am now on a long course of it, but leaving the country for 8.5 months so will have to see how I survive after tapering the entocort when abroad.
 

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Is there any way that your Dr. might write you a script that you can get filled and take with you? Though it requires a script its not a controlled substance, so there should be no conflict with local laws. If things go badly after the taper it sure would be nice to have a backup plan, especially far from home.If/When you get the chance to reply:How long did you need to wait to go back on the Entocort? I'd switched GIs between my two courses, so the question didn't arise.
 

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Discussion Starter · #5 ·
I am off the Entocort and now abroad. I got a large supply to take with me but it wasn't working after almost 4 weeks. So my stash is in the cupboard anyway. I was last on it a full year ago and it worked then. My doc hated to use it this time because he feels it has too much risk of side effects and a scope showed I had no inflammation anyway. My solution now? A huge container of plain yogurt nightly. It has nipped my D in the bud, so to speak.
 

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Thanks for finding the time to reply, you must be quite busy with all of the changes. Wow, a year between doses! I believe I'd go mad waiting for the return of relief. My current GI is looking to keep me on a low maintenance dose -I hope so.That's a bit odd, that its effectiveness was decreased after 4 weeks. The typical dosing schedule should have had you still at the max 9mg. I've read repeatedly that Entocort is mostly a hit or miss med. I can't recall any info. on its having a decreasing effect, or of the body building up tolerance to it, over time. Maybe once the inflammation was addressed you've achieved somewhat of a remission? That would be wonderful. I'm rather new to this med. so real life experiences with it are good to know about.Yeah, side effects. It beats Prednisone but its still a concern. And each of us has different factors to take into consideration.I wub yogurt, though I've cut out all other dairy (snip of cheese from time to time -ssshhh). I'm glad to hear that you've found a balance. Well, thanks again for the info. and best of luck to you!
 

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Discussion Starter · #7 ·
It is odd that the entocort did not work this time around, I was praying it would and so anxious about my time here abroad away from the medical help. In the past when I took entocort it always firmed up stools and reduced my number of movements beautifully after two weeks or so. My problem has been liquid D and 5 - 10 urgent movements a day, over 3 years of it. This time entocort made things worse, if anything. Stopping it after 4 weeks and loading up on yogurt has turned things around, fingers crossed. I cannot afford to be crippled by D while I am here! I guess the Flagyl I was given twice in the past 6 months in an effort to crush giardia caused the D to get so bad. The giardia was eliminated but the D got worse.
 

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I used an anti inflammatory called sulfursalazine for about 12 years which was very successful for me.A small amount of inflammation was found in my colon but no blood at all.I think anti inflammatories should be tried a bit more widely to treat IBS but maybe at much smaller doses than for actual confirmed IBD's.
 
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