Good news!! Longing no more

wonderwoman · Post by **wonderwoman** » Mon Oct 11, 2010 7:07 pm

Linda, I was on three Entocort for only 5 days, then 2 for 14 days, then alternated between 2 & 1 for 24 days, then 1 a day since 9/16. I had very fast results. I still can't believe it because I was pretty sick with a terrible relapse that lasted about 6 weeks just before starting the Entocort.

Try alternating 2 & 3 for awhile. Good luck.

hoosier1 · Post by **hoosier1** » Mon Oct 11, 2010 8:10 pm

Linda,

Nice going!

Rich

Linda in BC · Post by **Linda in BC** » Mon Oct 11, 2010 9:35 pm

Congrats! And yes, you may have to experiment with cutting the Entocort back to 2 per day, or 2 every other day, if C seems to be a problem.

Thanks for answering my question, Tex.

Ginny, yes, that was going to be my next question : how long to stay on it. From what you said and all else I have read on here, it sounds like two months is definitely not enough. I have three months supply at 3 per day. I am thinking I will order another three months, stay on it for 5 months and then take a couple to taper off.

JoAnn, this time round, what was your schedule ( how long on and how long to taper off?)

Linda

Ginny · Post by **Ginny** » Tue Oct 12, 2010 7:51 am

Linda, it's hard to say how long and how many; each of us are different. I have never been able to take more than 2 a day and have lived on one a day for a long time. So it will really depend on how you are getting along. It really is the diet issue; trying to figure out all the intolerances and anything else that might affect your gut, i.e. mast cells/histamines. I believe that is what has made the difference for me and I think as well as for Gloria. My regimement has changed and I have not wanted to post about it because I have never been truly successful for any length of time (6weeks) and have relapses, however, I am down to one pill every other two days and am going to try one every other three days before going solo. I also take 1/2 a tablet of the old version of Imodium every day and it seems to have slowed the motility down enough to be functional. Hard to believe that a 1/2 tablet can work, but I am thrilled.

When you feel more like yourself and your BM's are consistently normal; month or so, then you will know it's time to try getting off the Entocort. If Ant is reading this thread, I hope he will share as well. He has been through it for over a year.

Here is to your success and good health. Ginny

Linda in BC · Post by **Linda in BC** » Tue Oct 12, 2010 8:48 am

Thanks, Ginny. After 13 years of almost constant D. I hardly remember what my "old self" feels like! LOL
but you have given me a good yard stick to go by.

Best of luck on your next step to tapering off!

Linda

Ginny · Post by **Ginny** » Tue Oct 12, 2010 9:15 am

Linda, 13 years is a very very very long time

! I am glad Entocort is helping; just remember to take it slow. One more thing, when I first when on Entocort (a yr ago) and started the diet, I immediately got better and I thought great I will get off of this stuff. So after 2 months I did, only to turn around with a major relapse in 6 weeks. My other intolerances kicked in and I love fiber; could not convince myself that I should eliminate it and that's why it took till this August to get it through my head that fiber of any amount was not helping.

Again, we are all different but JoAnn was a big help to me because her path was similar in the fact that we might take a little longer to get well than some others.

Ginny

ant · Post by **ant** » Tue Oct 12, 2010 10:47 am

Dear Linda

The letter I wrote to my GI in the post below pretty much sums up my timing on Entocort

http://www.perskyfarms.com/phpBB2/viewt ... highlight=

I stayed on it for longer than he wanted.

The actual dates are

9mg a day 26 June 2009 to 31 Jan 2010
6mg a day 1 Feb to 10 Mar 2010
3mg a day 11 Mar to 22 June 2010
3mg every other day 23 June to 25 August 2010
26th August off Entocort

At each stage I only reduced after a couple of weeks of firm to firmish BMs (no more then 3 not urgent a day) and no bloating or rumbling.

Hope this is useful,

Best, Ant[/i]

Linda in BC · Post by **Linda in BC** » Tue Oct 12, 2010 12:39 pm

Yes, that was very useful. Thank you, Ant.
Linda

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 12, 2010 1:12 pm

Linda

i am doing the happy dance at my computer

congratulations!! it is wonderful inspiring news.

big hugs
take care

Linda in BC · Post by **Linda in BC** » Tue Oct 12, 2010 2:02 pm

Thanks, Gabes..me too..happy dance at my computer

JoAnn · Post by **JoAnn** » Thu Oct 14, 2010 1:17 pm

Hi Linda, love your new picture. He reminds me of a buckskin horse we bought when I was about 16. He was my barrel racing horse for several years. I am so happy to hear that entocort is helping you so fast and so well! It has been a life saver for many of us on this board. I'm in the middle of a family wedding, reunion, etc. this week, but will get back to you when I have more time. I'm sure you're going to figure things out with the help of the entocort. Hope things keep going well, JoAnn

Gloria · Post by **Gloria** » Fri Oct 15, 2010 8:31 am

Linda,

What great news! I'm so happy that Entocort is helping you.

I'm considering reducing my Entocort dosage, but can't decide if I should wait until we return from Hawaii. I sure don't want to deal with D while I'm there.

I can't remember when I've done this well for this long, so I think I'm ready. When I do reduce, I'll take it very slowly. I'll continue to take 3 pills/day for two days, then 2 pills/day for one day, then back to 3 pills/day for two days. That will give me time to monitor if I can handle the reduction. It always takes 35 days for me to notice a degradation in my symptoms on the reduced dosage.

My 2-year-old granddaughter is wanting my attention, so I must go.

Gloria

starfire · Post by **starfire** » Fri Oct 15, 2010 12:34 pm

I'm quite sure I'd wait until after the trip (Hawaii), Gloria, but you are a much braver person than I am.

So glad you have been able to post while visiting in Utah.

Love, Shirley

Linda in BC · Post by **Linda in BC** » Fri Oct 15, 2010 8:30 pm

Thanks so much for the well wishes, Joanne. And good luck with the wedding, family, food and everything Yes, I was thinking my "Kya" would remind you of your good ol' buckskin ranch horse.

Linda

Linda in BC · Post by **Linda in BC** » Fri Oct 15, 2010 8:34 pm

Thanks for your support , too , Gloria, and I am so happy that you feel ready to cut back on the Entocort and are doing well. You REALLY DESERVE IT! I have to agree with Shirley, though, I would wait until I was back from my holiday, too. Unless you are sure you will be able to eat your own food. Are you staying in a place with a kitchen , or with friends?

Linda