How to get off Budesonide (Uceris)?

[ImDan]

For you guys that have used Budesonide (Uceris). How do you wean yourself off it safely?

I've been using it for 1 month now, however I've heard it's not good to be on it long-term. Currently taking 1 9mg pill per day.

 

[Charlotte.]

Did you discuss getting off of it with your ibd consultant team? When I got off of it, I took 6 mg in the morning instead of 9 mg for 3 days, then 3mg for two days, then nothing. A GP once told me that I would not need to taper it down as it's only 9 mg, but I think, tapering down is the smoothest way to get off of it, without having mood swings and hormonal issues.

 

[ImDan]

Did you discuss getting off of it with your ibd consultant team? When I got off of it, I took 6 mg in the morning instead of 9 mg for 3 days, then 3mg for two days, then nothing. A GP once told me that I would not need to taper it down as it's only 9 mg, but I think, tapering down is the smoothest way to get off of it, without having mood swings and hormonal issues.

I was given loads of samples of pentasa and uceris when i was in the USA (and told I should be getting biologics). However after speaking to a doctor in the UK they have a less "gung ho" approach and said I shouldn't be on such strong meds at this stage.

I'll maybe start dropping a pill once every 3 days and slowly get off it. Waiting lists in the UK are months to see a GI unfortunately

 

[Charlotte.]

I was given loads of samples of pentasa and uceris when i was in the USA (and told I should be getting biologics). However after speaking to a doctor in the UK they have a less "gung ho" approach and said I shouldn't be on such strong meds at this stage.

I'll maybe start dropping a pill once every 3 days and slowly get off it. Waiting lists in the UK are months to see a GI unfortunately

Yes, it's ridiculous, isn't it? You have to wait and wait and wait. But the systems are very different, private health system in the U.S., public one, without insurance in the UK.
The approaches seem to be very different from another either: In the UK, the step up approach is always recommend, due to funding issues, in the U.S. the doctor can decide, depending on the insurance company, but the doctor goes for the medication which seems to be the most effective one, according to studies, which might indicate the top down approach as soon as steroids don't lead to long term remission.

You could consider being referred to a centre which is more open minded towards early top down therapy, probably the ibd hospitals, if there is one in your region.

 

[Scipio]

I was on 3 budesonide pills/day for 4 weeks followed by a taper of 2 weeks on 2 pills/day followed by another two weeks of 1 pill/day.

The budesonide is for induction of remission but is not good for long term maintenance of remission. That's where the mesalamine (Pentasa, Lialda) or biologics come in. Mesalamine is a very mild drug that doesn't work for many Crohn's patients.

The "gung ho" US docs were recommending a "top down" approach where you start with the strong biologics early on. The other docs (UK?) are pushing the traditional "bottom up" approach where you start with the mild drugs and move up to biologics only after the weaker (and less expensive) drugs have failed.

The reason why Top Down has become fashionable is because it has been shown to produce a better long term outcome - fewer flares, longer remissions, fewer fistulas and strictures, etc. However, insurance companies (or National Health) don't favor the Top down because of the expense of the biologics.

There are other maintenance drugs intermediate between the weak mesalamine and the expensive biologics. Namely, azathioprine, 6MP, and methotrexate. all of these are immunomodulators that partially suppress your immune system. They may be other options for you and your doctor to consider.

 

[DEmberton]

I've just finished a course. It was 3 tablets (9mg) for 4 weeks, 2 tables for 4 weeks and 1 tablet for 4 weeks.

I was meant to start Azathriopine half way through, but we agreed on a wait and see approach. I'd rather not take anything.