lenght of time on endocort

rachdemots · Post by **rachdemots** » Fri Jan 24, 2014 4:49 pm

How long are most people kept on endocort? I am nearing my three month mark and I think my gastro wants to wean me off but I would like to stay on it longer...what is that average time people use it?

DJ · Post by DJ » Fri Jan 24, 2014 7:10 pm

Hi. When I was first diagnosed, my doctor told me to take Entocort 9 mg for two months then 6 mg for 2 month and return to see her. During my visit (after 4 months on Entocort) my doctor told me that she had just gone to training and that she was thinking of me. She told me that people who come off Entocort too quickly seem to relapse more often. She told me to reduce to 3 mg and return in two months.
So her plan was six months with weaning every two months.

After following this group for a while, I stretched my next appointment with the GI for an additional 6 weeks and made my own mini-dose pills to wean even more slowly.

I saw my GI in early January and told her what I was doing. She told me to try to get off within a couple of months.

My opinion is that once a person is on Entocort, they should wean off carefully. If you elect a quicker weaning, you can still reduce your dose a bit at a time and let your gut adjust to the big change.

Good luck!

DebE13 · Post by **DebE13** » Sat Jan 25, 2014 6:26 pm

From experience, wean off slowly. I've been taking entocort since February of 2011. Most of the time it was a low dose since I wanted to be off of it as soon as I started taking it.

I did rush and it did't do me any good. I'm taking it now- 3 mg every forth or fifth day. I am nowhere close to norman but it's tolerable since I don't want to take any steroid if possible.

My GI seems to have no issues with me taking it long term. Maybe it would be different if I was was at higher dose.

Leah · Post by **Leah** » Sat Jan 25, 2014 7:46 pm

I was on for 6 months. First month 9mg., next two months 6mg. day, following 2 months 3mg day, last month spent weaning slowly off of it.

leah

brandy · Post by **brandy** » Tue Feb 11, 2014 4:03 pm

Rach,

I was on entocort for 4.5 months. My GI Dr. was also a three month guy. Typically three months is not enough time on entocort. I suggest listen to your body on this. Typically a long slow taper helps in getting off of entocort. My taper, for example and this is only me, everyone is different looked like month three I was on one entocort every other day. Month four I was on one entocort every third day. And the last two weeks I was on one entocort every four days. Then I finally stopped. Hopefully this will help you out.

Brandy

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christinakay · Post by **christinakay** » Tue Feb 11, 2014 5:41 pm

I started entocort in Dec, 2012. I have been slowly tapering off and am now taking 1 pill every four days.
I am happy to say that I am having normans most every day. I watch my diet very carefully.

Christina

rachdemots · Post by **rachdemots** » Tue Feb 11, 2014 10:20 pm

Thanks everyone...I think I am going to start to taper after I get through this latest flare from taking antibiotics (twice actually in the last month).