First week on entocort

lorimoose · Post by **lorimoose** » Wed Aug 14, 2013 7:00 am

Hello,

I have finished my first week on entocort. Based on your advice, I have completely cleaned up my diet.....no gluten, dairy or soy, and only cooked veggies, no fruit. For the first time since it started and ultimately, my diagnosis, I am starting
feel better.

I know it is a long road, but seeing improvement makes the path hopeful.

Thanks to all of you for sharing your experiences.

Warmly,
Lori

JLH · Post by **JLH** » Wed Aug 14, 2013 7:55 am

I hope it goes very well for you.
Do you have the real thing or generic?

I'm sure I will be joining you after my GI appointment next Wednesday.

christinakay · Post by **christinakay** » Wed Aug 14, 2013 8:26 am

Lori,

I'm glad you are feeling better. When I first started entocort, it took about a week to feel better.
Hope it continues to help.

Christina

lorimoose · Post by **lorimoose** » Wed Aug 14, 2013 8:46 am

Hi Joan,

I think I am on a generic version of Entocort, although it says Entocort EC on the pills. I was only charged the generic copayment at the pharmacy.

I had been very hesitant to take a steroid medication. When, the Lialda did not help much and then failed completely after 2 months, I was miserable. I called my doctor, and he convinced me to start the Entocort, and this board taught me about the "real" diet connection. (I thought I was eating carefully...boy was I mistaken!!) I see the combination is the key.

I hope your doctor offers you help on Wednesday.

Warmly,
Lori

Post by **tex** » Wed Aug 14, 2013 8:46 am

Thanks for the update. I hope your progress continues.

Please keep us posted.

Tex

lorimoose · Post by **lorimoose** » Wed Aug 14, 2013 8:51 am

Hi Christina,

How long did you stay on Entocort? And when did it fully give you a healed feeling? I am appreciating each little step.

Warmly,
Lori

Leah · Post by **Leah** » Wed Aug 14, 2013 11:48 am

Good news Lori! Keep up the good work.
I was on Entocort for 6 months.. One month at full dose. One month at 6 mg.. Two months at 3 mg a day. the last two months were spent slowly weaning the dose down and "fine tuning" the diet. When you get to a low dose, your reactions to things will be more apparent. That's when I realized that i couldn't eat peanut butter ( it's part of the soy family).

Just know that when you start to feel a bit constipated, that s your cue to lower the dose. Don't be in a hurry to get off of it. there is a higher rate of relapse for those who stop too soon. Give yourself plenty of time to heal.

Take Care
Leah

christinakay · Post by **christinakay** » Wed Aug 14, 2013 12:50 pm

Lori,
I started entocort mid December 2012, with a drastic change in my diet. Right now I am
starting to taper off VERY slowly. Yes it did help me to feel better. I still have days that I am
very tired but overall I feel pretty good.

Christina

lorimoose · Post by **lorimoose** » Wed Aug 14, 2013 1:21 pm

I am happy to stay on the Entocort, even though I had initial fear . I will be traveling starting on Saturday, and food will be more of a challenge. The first few stays I can stay with a friend, and cook to my diet needs. The next few days I will be dependent on restaurant food. I have been googleing restaurants in the area and emailing to ask if they can accommodate my simply diet. I may end up eating 3 meals a day in one restaurant....maybe they will save me a booth

!

Warmly,
Lori

Leah · Post by **Leah** » Wed Aug 14, 2013 5:34 pm

Have a good time Lori!

Leah