Entecort

Hi everyone!  I'm new here.  Here's a brief background:

I'm 32 years old and was diagnosed with moderate Crohn's of the terminal ileum in January 2010 (via colonoscopy) and was started on a course of Flagyl along with Pentasa.  3 weeks later and no better, I was put on Entecort 9mg and have been on it since.  I noticed a HUGE improvement in symptons and up until 3 months ago, was having no side effects whatsoever.  At my last GI visit, I was weighed and came to the grim realization that I've gained 25 pounds in the past 3 months (after 10 years of being steady)(I THOUGHT those jeans were getting awfully tight!!!).  I also have started with crazy mood swings and have been driving my poor husband nuts.  I'm usually a very even-keeled person!!

We tried to taper down to 2 pills (6mg) per day and I started having pain again, however, my moods became much more stable.  I had to go back up to 9mg and within days, I was a maniac again.     My GI has decided it's time to stop the Entecort and to move onto something new - it's been over a year and according to my recent Upper GI series, I still have active inflammation AND I'm obviously starting to show long-term use effects.  He said that Entecort is great for lack of side effects in the short term, but typically, the longer people are on it, the more they start to show effects similar to prednisone.

Has anyone else had this happen to them?  I haven't had much luck finding others who have been on Entecort for a year or more, and was hoping to find a few here.

I'm stuck on it for another 5 weeks since I am now part of a clinical trial (open label, so I know I'm getting the drug) for a new Crohn's Med.  I have to maintain my current medication regimen during the study and have 5 weeks left.... more than a month left of the wife from h*ll. 

I know I'm having the typical "steroid effects" now because not long ago, I was stupid and waited too long to call in my refill.  I wound up going 2-3 days without the Entecort and I was, without a doubt, suffering withdrawal type symptoms.  It was miserable until I started it again.  This is why they don't want you to stop cold turkey.  Yeah... I was really dumb.

I've had cd for 40 yr's. so my cd is at a stubborn spot that was my ti. always seemed inflammed, anyway entocort gave me horrible side effects of bruising easily, and thin skin on face, arms,hands, and evan inside of my cheeks and roof of my mouth, all that skin was really sensitive in my mouth to anything hot, evan spicey hot as well, would burn my mouth. Stopped, and it's slowly getting back to normal. evan my the skin on my hands don't cut and bleed like they did on ent. plus it did nothing for my cd, I'm also on rem, which helps, but not remission type help. Pain med's I can count on for relief more than any drug.

AG

Usually, Entocort is prescribed at a dosage of 9 mg for only up to 8 weeks, to achieve remission. Clinical trials showed that if a patient stayed on 6 mg Entocort for another 3 months, their remission would last longer.

But each person is different, of course, and so docs vary the length of time and amount of doses, accordingly.

When my daughter tried to taper completely off Entocort in 2006, she landed in the hospital, which is why she stayed on a low dose for years. Last year, she used LDN to successfully taper completely off Entocort.