I'm new at this.

Post by **tex** » Sat Jan 06, 2007 10:10 pm

Pat,

I'm kind of surprised that your doctor is only prescribing it for 6 weeks. It usually takes much longer than that for healing and "stability" to take place. Hopefully she well reconsider. Maybe she's planning on reducing the dose at that point, rather than discontinuing it completely.

With any luck at all, though, you should see some improvement within a week or so, if you've already been taking it for a week and a half.

Tex

Pat · Post by **Pat** » Sat Jan 06, 2007 11:32 pm

Thanks, for your encouragement. I am hoping for remission. I just have to be patient.

starfire · Post by **starfire** » Sun Jan 07, 2007 6:50 am

For what it's worth..............6 weeks seems a very, very short time to be taking the Entocort in my opinion also.

Love, Shirley

bobh · Post by **bobh** » Sun Jan 07, 2007 10:37 am

My Dr explained that Entocort helps control symptoms, but is not a cure. As Tex has said at various times, there is no known "cure" for MC, but some people get a permanent remission. So unless we are pleasantly surprised, the MC condition is rather permanent.

I wish I could control my symptoms without meds. But if I had to choose between malnourished or taking Entocort, I would take the med. And the understanding I have with my MD, is that this could go on for years.

As I said in a recent post to Beth, I was told to continue taking the Entocort as long as I felt ANY inflammation. And not to discontinue it until I had been symptom free for 3 full months - including any feeling of irritation in the colon - rectum area, even if it didn't turn into full blown diarrhea.

Maybe your MD has you on 6 weeks to make sure you come back and see them with a status report - but certainly they have to be prepared to extend your prescription if it is helping. And if it ISN'T helping, consider asking for a short round of Pred that quickly tapers off, to halt the inflammation.

JJ · Post by JJ » Sun Jan 07, 2007 10:58 am

Hi...After I started taking Entocort, I was only able to wean down to one capsule every third day. I was never able to toally go off...then stress at work caused me to have a major flare and I was back to 3/day. Now the doc says I can start tapering again...I am cureently taking 2/day. When I elimindate the Entocort further, I will start taking 2/day, then 1/day on the off days. I don't plan to drop down to one a day all at once. The gradual approach works best for me....JJ

harvest_table · Post by **harvest_table** » Sun Jan 07, 2007 5:58 pm

tex wrote:Hey, thanks Joanna, for the link.

Now how in the world did I get 85 % out of 26%? I must have gotten the statistics from two different articles cross-contaminated. LOL. So much for my memory.

Well, I think this is still very significant at 26%. don't you? This article has continued to simmer in my brain since I read it. Too bad it's not easy to access.

Tex wrote, regarding article.

If I'm interpreting that article correctly, it says that they took a sample of 38 patients diagnosed with LC, and 100 patients who had no LC diagnosis, and no symptoms, and the researchers found that exactly half of the total sample of 38 diagnosed LC cases, had relatively light cases of inflammation, so they decided to classify them as a paucicellular subset. Okay, that's fine with me, if they want to do that.

The kicker, though, is the fact that of the population of 100 undiagnosed individuals, 26% of then had LC, and were'nt even aware of it. Incredible! They were afraid to even comment on that can of worms.

Hummmm...........

Pat, Wish you good luck with the Entocort. It worked well for me, took it for 6 months. Keep the faith and keep us posted.

Love,
Joanna

Post by **tex** » Sun Jan 07, 2007 7:45 pm

Joanna,

Oh yes, I consider that to be a very remarkable percentage, especially for a population of patients where MC was not even suspected.

Love,
Tex

Pat · Post by **Pat** » Sun Jan 07, 2007 8:14 pm

Joanna and others that took Entocort for an extended time,

Did you have side effects from taking it for so long?

Thanks,
Pat

JJ · Post by JJ » Sun Jan 07, 2007 11:31 pm

Hi...nope...feel fine....had a bone density test and that was normal. So far so good...JJ

harvest_table · Post by **harvest_table** » Mon Jan 08, 2007 2:06 am

Pat,

I had no problems with Entocort either, in fact it was the first medication I tried that helped and did not make me feel worse, (other than Pred) my symptoms improved and instinctualy, it felt safe to take long term. I did take a 2 month round of Pred just prior to starting Entocort which probably gave me a head start towards healing. It helped alot, but would not want to take it long term.

Also started a GF diet at the same time I started Entocort with a plan to take the med long enough to heal my gut, wean off it slowly and then allow diet to control my symptoms. There is a 8 week marker after weaning off Entocort (there is a link here) that symptoms often start returning for folks and they did for me slightly so over the coarse of the next few months I eliminated all dairy, sugars, grains, processed foods and have morphed into the way I'm eating now. I would
consider myself multi-intolerant, and eating a very healthy diet now.

Wish you the best with Entocort, and join a few others here that feel it might be in your best interest to take it longer than your Doc is
suggesting, especially if you respond to it well.

Keep us posted and hang in there.

Love,
Joanna