Entocort...........Anyone taking it?

Today's visit to my GI was not so great.  Not in remission after taking Lialda since September.  He is giving me a steroid called Entocort.  The side effects list scares the crap out of me (no pun intended, really) and WebMD makes it look even worse.

Is anyone taking this drug and if so, are you suffering the side effects?

I start this for a month and will get an ultra sound and then swallow the pill camera.  I really thought I would have a grip on this by now.  Is it usual to take this long to get a flar under control?  Only diagnosed in Sept. of last year.

Thanks in advance.

I took it about a year ago for another problem, but while I was on it my gut felt better too, I did not experience any side effects, and prefer it over prednizone.

I have been on it since the beginning of January.  No side effects, no moon face, I feel fine on it. Not sure how much it is doing for my UC though.  The only reason I might stop taking it is because when my deductible starts over in March it will cost me $1100 at the pharmacy.  Can't afford it. 

Entocort is a different variety of steroid. It's considered a "topical" medication because supposedly very little is absorbed by the body. It's used more for Crohn's than UC because it releases higher in the digestive tract than most UC occurs.

Please be aware that even though for most people the side effects are less noticible than with Pred, serious side effects can occur, especially with longer use. It isn't quite as strictly topical for some people as was originally believed.

The usual dosage is three capsules once a day.

It is called a glucocorticosteroid made to treat the intestines.  It is not supposed to be a systemic steroid like pred.   Like Judy2 says, it is a topical treatment.  But to me, from what I have read so far, the possible side effects are scarier than the known sides of pred.  So I took my first dose today and we'll see how it goes.

Post Edited (mdf34) : 2/26/2010 5:26:25 PM (GMT-7)

Entocort helped me with my first major flare right after I had my daughter in '06. With my next flare, it didn't do a thing and I ended up on pred. I didn't notice horrible side effects from either, but the pred was a little worse.

mdf34- I think it can take months. Not immediate like the prednisone. I have been on for two months and see no difference.

Thanks for the info.

I haven't gotten blood or mucous.  I get severe cramping and urgency to go.  The cramps are of a 11 on the 1 to 10 scale of pain.  I finally got to try the bentyl during the episode last night and it seemed to help the pain, quickly I might add.

That's good. I just had to stop taking it because it will cost me $1100 for 30 day supply until my $4500 deductible is met. I can't afford it. Maybe once it will not cost me anything I will go back on. Just took day fifteen two shots of Humira. Keeping my fingers crossed it kicks in.

It's a very expensive drug, but for me it was my miracle drug. Although, I had some side effects from it after being on it for nearly two and a half years. The worst long term side effect for me was stretch marks with no weight gain. I have them all down my legs, upper arms, and sides. When I was on Entocort I started lifting weights and had to stop a couple of weeks later because two tiny stetch marks started forming on my flat bicep. =(

I was on 9 a day for the first 6 months or so, a dose I've seen no one else reach.

Still beats prednisone!!!

Glad it's starting to kick in for you. Hope it makes you feel better.

Nine a day? Good God! I had tachycardia at three.