Skip to main content

Replies sorted oldest to newest

I have been on it for 3+ years. 9mg/day-tried to wean off for a year but symptoms always came back. Dropped to 6mg/day for nearly 2yrs once I added Immuran. Am now almost all the way weaned off the Entocort. Minimal to no symptoms even on max doses. Only things I noticed were my fingernails got weaker and pealed/split a bit. Maybe a tiny bit more body hair growth-noticed a verytiny bit more peach fuzz on my cheeks, but very minimal-nothing I ever even tried to remove or anything. NOTHING compared to prednisone side effects for me!
I never felt jittery. I was on it for pouchitis that stopped responding to antibiotics alone. I also have a damaged sphincter due to a fistula surgery, so I also take a lot of fiber/Imodium to thicken my stool up to facilitate continence, and a symptom of my pouchitis is runny stools, so yes, Enticort definitely helped firm up my stools, but for me that was a good thing-I always assumed it was because it was treating the pouchitis rather than a side odbthe med, but I guess I never gave it much thought since it did what I needed it too. Good luck!
Thanks hope it continues. Don't really want to remove pouch but it's been challenging this past year so it seemed like the best option. So you're not off Entocort completely yet? I how when you are symptoms don't return. Everything seems like a bandaid effect to me. Feeling that surgery will always be the end result. Ugh
I doubt the amount of Entocort Im taking now is even having an effect (1 pill every 3 days), but I wanted a really slow wean to be sure I could get off. I agree, that for me the Entocort was pretty much just s bs said, not a solution. I only got off when I started the Immurdn which actually has been treating the underlying cause.

I had a really rough 2 years and thought for sure surgery was in my future, but this Immuran is doing the trick for me now, and if/when this stops working I plan to try out all the biologics -remicade, humira, cimzia, and anything else that hits the scene before I make the leap to surgery.

All the best!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×