Entocort Users, how you doin'?

I had Entocort as part of my Crohn's cocktail for just over a year. During that time, I had so many changes and/or adjustments to my meds that it became quite confusing as to what was working and what wasn't.

The first Crohn's treatment I had was Lialda and Entocort. I was on that for several weeks with no noticeable change in symptoms. That's when the drug cocktail started changing.. added pred, Humira, etc. to the mix.

Anyway, to make a long story just semi-long, I am now trying to get *entirely* off of the prednisone, and would love to hear from people here that either are currently using Entocort, or have used it in the passed. How well did it work for you?

I wish I could remember her forum name, but there was a lady that used to post here that said her young daughter was able to keep her Crohn's completely in remission with just *one* capsule of Entocort per day. Wow, how sweet would *that* be?

Right now it looks like my cocktail is going to be Pentasa X4, Entocort X3, Azathioprine 100mg, and zero pred.

Hi CrohnsDaddy,

I've been taking Entocort and Pentasa since April 2006 and am slowly decreasing the dosages. I started at the same dosages you are now taking but have reduced the Entocort to 1 pill (3mg) per day and just last week reduced the Pentasa from 16 a day to 12 a day. I'm having a mild flare from the reduction but I seem to be improving already, so I should be able to stay at 4 less pills a day.

I hope you do at least as well too.

Hi, I have been on the "maintenance" dose of entocort for seven years now, two pills a day. It is probably the best med for me. My doctor at Johns Hopkins said it was fairly safe long term considering some of the options out there. It has kept the last seven years down to only two flares for me, so I've been able to stay off of prednisone except for those two times. Before that, it was a constant up and down. I never have had any side effects from the drug, I go for bone density testing every year and have a Reclast infusion for prevention once a year. Hope this helps.
Good luck!
Marla

Hi... I've been taking 9 mg of entocort, with Lialda (4 caps per day) for about one and a half years now.  It has worked rather well for me.  It's not perfect... but beats the heck out of where I was.  I can function pretty normally, am able to leave the house without "fear", old down a part-time job, etc.  I think it has been an answer to prayer for me.  I was taking pred before, but my GI made me wean off of it before starting the enotocort.  Good Luck!

Hi CrohnsDaddy,

My daughter did well, but it wasn't only on Entocort. She was and is on a very strict diet -- we don't think the one pill of Entocort, by itself, could have kept her out of a flare for years. However, a colonscopy earlier this year revealed that, though her stricture had disappeared and she has zero symptoms, there are still a couple of spots of active inflammation -- and her ability to absorb B12 has been steadily declining. (Gets B12 shots now.)

She recently used LDN to taper of Entocort, and next week will have labs done to see whether sed rate or CRP are rising in the last four weeks since she has been completely off Entocort. If yes, we look for another med. If not, before shouting halleluhah we have a colonoscopy done to confirm no inflammation. 

I've been on Entocort since March (9 mg/day), I have pretty normal BMs and the pain has decreased (my CRP has also gone down dramatically), but I still have a bit of nausea and I still get some pain. I may have to switch to something stronger to get me into remission unfortunately, my doctor said that I'm really at the limit of what Entocort can treat. I'm also having my gallbladder tested, though, it's possible that my gallbladder is causing the majority of my symptoms. Overall though, I have been very happy with Entocort - no side effects and I have improved greatly over what I was before I started taking it.