Taper off entorcort..

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CathyMaine
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Taper off entorcort..

Post by CathyMaine »

Hi All,
Well it's day 3 of 1 pill a day of Entocort and still no D!! I hope this continues. I'm going to try to stop taking it all together at the end of the week. Since my GI has not been helpful with this process, anyone have any tips for decreasing from 1 a day? Should I go to every other day? Any help would be appreciated. Of course, I am watching everything I eat, still GF and DF.
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Joefnh
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Post by Joefnh »

Cathy this is one of those areas that slow and steady wins the race. I would say from what I experienced and several others have posted and if you have the pills available going to 1 every other day for a while is a good safe precaution. I haven't looked back at your other posts, but how long have you been at least GF and possibly SF and DF. I believe you would want at least 3 weeks of at a minimal of GF before you fully taper off of the entocort.
Joe
brandy
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Post by brandy »

Hi Cathy,

You've asked an extremely important question and I agree with Joe that the slow and steady wins the race with entocort taper. I'm hoping some of the other readers and Tex will chime in here. How long have you been on Entocort in total? I believe the history of this board is being on Ento 3-6 months and even better 4-6 months has more effective results in getting off Entocort permanently which is why I tried for 6 months. I was on a total of 4.5 months and tried for 6 months but I could no longer take the dizziness. Joe's comments of being GF DF SF for a minimum of 3 weeks is probably good advice. Yes when I stepped down from 1 a day then I went to one every other day for awhile then one every third day for awhile then I went to 1 every 4 days for a while then I went 1 every 5 days for awhile. I never did this but I believe one of the posters pours some out then puts the cap back on, i.e. goes to 1/2 pills. So you could even go down to some kind of 1/2 pill kind of taper.

Key things to consider---you want to feel very, very confident in your diet when you start taper. Also when you get ready to get off if you have any "stressful events" coming up on the next 8-12 weeks, i.e. job change, new house, etc consider staying on longer to get you through the "stressful event." I believe in the 8 weeks after last Entocort we are at risk of relapse so I did not eat out during that period....maybe I was extreme....who knows.

At the end of 3 months it felt kind of seductive like I could get off of Ento but I'm glad I stayed on the extra 6 weeks.

Hopefully some other readers can post their experiences as this is an extremely important question.

Brandy....ps... please post again if you have more questions. I don't think this is discussed enough.
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tex
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Post by tex »

Brandy,

I've already posted my 2 cents worth 3 days ago, here.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
CathyMaine
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Post by CathyMaine »

brandy wrote:Hi Cathy,

You've asked an extremely important question and I agree with Joe that the slow and steady wins the race with entocort taper. I'm hoping some of the other readers and Tex will chime in here. How long have you been on Entocort in total? I believe the history of this board is being on Ento 3-6 months and even better 4-6 months has more effective results in getting off Entocort permanently which is why I tried for 6 months. I was on a total of 4.5 months and tried for 6 months but I could no longer take the dizziness. Joe's comments of being GF DF SF for a minimum of 3 weeks is probably good advice. Yes when I stepped down from 1 a day then I went to one every other day for awhile then one every third day for awhile then I went to 1 every 4 days for a while then I went 1 every 5 days for awhile. I never did this but I believe one of the posters pours some out then puts the cap back on, i.e. goes to 1/2 pills. So you could even go down to some kind of 1/2 pill kind of taper.

Key things to consider---you want to feel very, very confident in your diet when you start taper. Also when you get ready to get off if you have any "stressful events" coming up on the next 8-12 weeks, i.e. job change, new house, etc consider staying on longer to get you through the "stressful event." I believe in the 8 weeks after last Entocort we are at risk of relapse so I did not eat out during that period....maybe I was extreme....who knows.

At the end of 3 months it felt kind of seductive like I could get off of Ento but I'm glad I stayed on the extra 6 weeks.

Hopefully some other readers can post their experiences as this is an extremely important question.

Brandy....ps... please post again if you have more questions. I don't think this is discussed enough.
Thanks Brandy, Joe and Tex, I did read your other post so thanks for that. I have been watching my diet and been @ least GF since November and went DF approximately 6 weeks ago. I have been on the Ento for 9 weeks total. I have plenty of my prescription left and my GI is willing to call in more, if I need it. Brandy, I am watching literally eveything going into my mouth so my diet is all set. I frequently eat before my DH and I go out to eat and then sip club soda, so that's not a problem. I lead a pretty stressful life, unfortunately, but you make a very good point. Maybe I should wait to completely go off until the summer, when my stress level goes down. I will keep watching this post and let you know how I do! Thanks again!
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Post by brandy »

Hi Cathy,

It sounds like you are doing well and you have a good plan by the way! I didn't go completely DF (I was stupidly stuck on yogurt) until 3 weeks before I got off of Entocort and then I went DF as an insurance policy prior to getting off of Entocort but started doing better right away.

Another thing to be aware of is if we have to go back on Entocort a 2nd time around it tends to not be as effective....i.e. takes longer to kick in. That is another reason I stayed on for the 4.5 months as I kept seeing posts about that.

I guess in the big picture to some extent you have to listen to your body.

Tex...sorry....I don't know how you keep track of all of this.

Best wishes, Brandy
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Post by Leah »

Hi Cathy. I'm right behind you in the Entocort adventure ( I'm at 6 mg). I originally thought I'd taper off as fast as I could, but after reading all the posts here, I realized that staying on it longer might be a better plan. Let us know how it goes.
Leah
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