Question While on Entocort

Joefnh · Post by **Joefnh** » Tue May 11, 2010 10:38 am

I have been taking Entocort 9mg now for 3 weeks and I did see a significant improvement within 5 days of starting treatment and have been doing quite well with it. Today though I did have a bought of the D with cramping that did pass fairly quickly. Does that mean that this med is not working well or is this normal.

My GI wants me on this medication at the 9mg level for 8 weeks and then will begin to taper down

Can anyone offer their experiences with this medication?

--Joe

ant · Post by **ant** » Tue May 11, 2010 11:11 am

Dear Joe

This sounds similar to me. I was on Entocort 9mg for 8 months before tapering down. I had flares on and off all that time, but noticed that the long term trend was improvement. I only reduced to 6gm after 6 weeks of mainly firm BMs. IMHO 8 weeks is too short a time to start tapering down from 9mg.

Hope this helps, Ant

Gayle · Post by **Gayle** » Tue May 11, 2010 1:56 pm

Hi Joe,

Please just keep the faith here with your Entocort. You sound as though you are responding well.

The response to Entocort in my case has never been exactly "linear" (i.e. meaning an uninterrupted line of improvement). Rather, it has been to experience occasional ups and downs for a while, (a bit of a bumpy ride) but with an overall 'general progression' toward control of symptoms.

In fact, in my case, by week 5-6 I have been experienceing some degree of C

!

The thought that you might ever get to that point -- is probably hard

for you to believe right now, but that is also possible.

Hopefully you were directed to take your full dose of Entocort first thing in the morning before breakfast. This gets the drug down to the area where it is to become activated the fastest with the least amount of impediment, thus hitting the 'target area' full strength.

Do try to consider also, that if there are various food that you are already aware that you may react to, you should try to avoid them, and try to keep you diet kind of 'low key'.

Wishing you continued improvement,

Gayle

Joefnh · Post by **Joefnh** » Tue May 11, 2010 2:03 pm

Thanks for the responses and Gayle I do take the full 9mg early at around 6AM and then have breakfast 90 minutes later. Overall I am quite happy with the efficacy of this medication and look forward to continued benefit, I was just a bit surprised at the small step back.

Overall I very new to CC and Crohns and I am still working on figuring things out.

Thanks again

--Joe

grannyh · Post by **grannyh** » Tue May 11, 2010 2:06 pm

I really don't know how long it took to get results with entocort.. I can still have a bad day or bout with cramps if I eat a ton of what I shouldn't even while taking entocort.

I have been on entocort for about 5 years..down to one pill a day for over year. Entocort gave me back a life! Some people succeed with diet, some with other meds..some with a combination... each one of us are different.

All in all for such a short time on entocort I would say you are doing just fine.. as long as you aren't having any side effects. I never had any side problems but some people here have.
grannyh

JoAnn · Post by **JoAnn** » Tue May 11, 2010 3:27 pm

Hi Joe, it sounds like entocort is working well for you. When I first started taking it, I would get discouraged when I hit some bumps in the road. I think it's pretty normal. I was actually off from it for a while, but had a flare in Dec. that really set me back. I got sick from some soup and caught a virus. My immune system went into high gear. I'm down to 1 a day now and after I get through some important family and professional stuff, I am going to try to taper completely off. You might have some food that you're reacting to. I know now that when I have an off day, it's usually something I ate with some ingredient that affected me or stress or I'm coming down with something or sometimes I don't know why it happens. I'm just glad the entocort is there to keep me from going into a full blown flare. If I have to use it longer, I will. Good luck, JoAnn
(btw, love your dog. I've got a golden named Sadie and a black lab named Boomer. They too seem very in tune with my health and moods.)

Ginny · Post by **Ginny** » Tue May 11, 2010 3:43 pm

Joe, Entocort has been my life saver as well and yes you have days that are not perfect. It usually has to do with what you ate. I am on my second round of Entocort. Like JoAnn I had a big flare occur and could not get it under control on my own. This second time around on Entocort has taught me to be more patient and to understand that it might take a little longer than I had expected and I might just be one of those that can not get it totally under control by diet alone. I am also down to one a day and hopefully in the near future I will get to every other day again, BUT I am so glad to be able to take something that allows me to function!! I was never ill before this and taking meds is something that has not come easy. Hang in there; patience is most important. Ginny

Joefnh · Post by **Joefnh** » Tue May 11, 2010 3:50 pm

Thanks Ginny. Patience is the hard part and like you this is the first illness that I have had that has required medical attention and medications like this; when my doctor said I should get a medical alert ID, I felt like I would never be normal again. I should not complain though I can think of several friends who have gone through much worse medically.

--Joe

grannyh · Post by **grannyh** » Tue May 11, 2010 3:53 pm

It was suggested I get an id alert bracelet as well against NSAIDS... but if someone slipped me a small dose of aspirin if I had a heart attack.. the D would be a minor problem vs a sod nap:)
grannyh