What is Budesamide?

It's Entocort. It is a designer steroid/immunosuppressant. Works well with less side effects than Prednisone, but dangerous if taken for too long at the 9 mg max dosage.

Comes in small pink capsules. 3 mg each. It is often prescribed in lieu of Prednisone as it takes less of a toll on your body, but it is not side effect free if taken for long periods at max dosage.

It potentially could work well for the symptoms you described.

Thank you for your reply! Hoping can do short course and then maintain with Cortifoam.
I'm still not eating any fruits or veggies except applesauce and bananas and am really hope to expand my diet, slowly of course, once I get things under control.
Appreciate info!
Laurie

You'll find plenty about it if you spell it budesonide.

I think the benefit that budesonide has over prednisone is that it is apparently not absorbed until it is in the lower part of the bowel and, therefore, not as much steroid is systemically absorbed (thus fewer side effects).

Yes, it is a steroid, but doesn't release until it gets to your lower bowel (aka pouch in our case) so it is supposedly more "topical" to your pouch and less systemically absorbed. I have been on some dose or another of it for nearly 2 years with little to no side effects-I notice that my fingernails split more while on it than before, but that is about all, and I have a lot of side effects from prednisone back in the day. This drug definitely helped my pouchitis symptoms, but getting off it without a flare has been difficult.

Has anyone gotten off Budesomide after using it for cuffitis? Seems like everyone who's mentioned being on it has struggled or flared when going off. I'm feeling frustrated because the bleeding is getting worse but I'm hesitant to go on it if I'm going to be on it long term or forever.
I realize, as with Prednisone, that tapering off is critical, but with tapering does anyone have experience or know anyone able to get off Budesomide? How long are j-pouchers typically on Budesomide for cuffitis? Dr. says I could stay in it long term if it works, but I really don't want long term. Not sure what long term is- is it possible it could kick out cuffitis and I could be off it in few months? Thanks for any info on use of this drug and implications on health- heard it weakens immune system, too. I kept hoping all week that Cortifoam and 10 mg Prednisone would gave helped, but not. Feel like out of options. Thanks! Laurie

I was on Entocort for the max 9 mg dosage for 6 months (for pouchitis/strictured J Pouch inlet) and was able to wean off of it pretty quickly. The rapid wean was necessary due to side effects I experienced. I had improvement of the condition in that 6 months and continued improvement from changing my diet.

Thank you! I appreciate your response! I've held off and am seeing some improvement so maybe the 10 prednisone and Cortifoam just needed more time. Of course, in my desperation, wanted immediate relief! Patience is a virtue, especially for us jpouchers!

Regular Budesonide pills never worked for me but I've been on Budesonide enemas for 2.5 years. While the enema works well and improves quality of life, it is impossible for me to get off and God only knows how hard I've tried. My pouch flares severely without the full 9mg dose and my GI doctor is saying that it has caused the 3 fistulae I have from pouch/cuff to the vagina.

If you're thinking of trying it short-term for a couple weeks, that might be fine but long-term is not advisable. Something to think about.

Interesting.. I will ask about the Budesonide suppositories, but now the inflammation is all throughout anus as well. I'm not sure I understand how it causes fistulas.... Can you explain that. I'm happy to not have had fistulas and surely wouldn't want to add that to my lust if problems. Thanks for your input and I hope you are doing better!
Laurie