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Struggling to reduce dosage of Entocort (Budesonide)

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Crohn's Disease
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Posted 9/13/2017 2:41 PM (GMT -5)
Hi peeps,

I am 45 years of age and was diagnosed with Crohn's about 16 months ago. It has only really become problematic in the last 7 months but by the time I was placed on steroids I was spending the whole day in bed fatigued and with my eyes burning apart from trips to the toilet.

The second drug that I have been placed on is Budesonide which is allowing me to live a more or less normal life, initially I was on 10 mg but have now more recently reduced the dosage to 6 mg which works too. But this means i have been using Budesonide continuously for about 3 months. My doctor is telling me that this is not a drug I can stay on indefinitely and that I now have to step down from 6 mg to 3 mg. Each time I try to do this my stomach reacts badly and I end up needing to sleep for 30 - 40 minutes each day. In a months time the plan is for me to completely come off Budesonide and I really can't see how this is going to be possible which is worrying me a lot.

I will contact my doctor and discuss this with him but it is hard to find a middle ground where I can support my family unless I am on some kind of medication. Has anyone else been in a similar predicament and do you have any tips?
Posted 9/13/2017 5:20 PM (GMT -5)
What other medication(s) are you on for your Crohn's disease?

And where is your Crohn's located? Left side of colon? Right side? Terminal ileum?

Budesonide is good for short-term use to get you out of a mild to moderate flare. But you should also be on something for long-term maintenance to reduce future flareups and prevent further damage. Budesonide isn't made for that. Your doctor is right that it's not a long-term solution (ie, shouldn't be taken for more than a few months at full dose).

3 months at 9mg isn't a problem for the vast majority of people. Some people are on 9mg/day for a year or two, but that is to be avoided whenever possible. Once you drop down to 6mg/day, you can stay on it longer than a couple of months - but only if you really need to. At 3mg/day, it's fairly safe for long-term use, but 3mg/day usually isn't enough to do you much good.

So taper off of it, as your doctor suggests, but don't be afraid to do it slowly (a couple months at 6mg/day and a couple months at 3mg/day shouldn't be a problem).

The main thing, in the meantime, is to find a long-term medication if you need one (and most people do, with the only exceptions being those with very mild disease).
Posted 9/21/2017 7:22 AM (GMT -5)
Thanks! I really appreciate your advice!

This is the only medication I am currently on. The terminal ileum is where it is located.

I think the next move would be to write a letter to my doctor and explain the situation fully and hint that often there is a longer term solution that needs to be sought.

Again I can't thank you enough for your advice.

smile
Posted 9/22/2017 8:10 PM (GMT -5)
Yeah, dude, I was put on 9mgs of budesonide to help me roll over onto Entyvio. I was just taking two pills a day but now I don't need them at all.
I did the loading doses plus a regular dose of Entyvio and I feel like the budesonide isn't necessary anymore.
Hope you get on a real medicine soon!
Posted 9/24/2017 5:14 AM (GMT -5)
I've been on steroids for 7 years so my case is not the best. I stayed for almost 5 years on entocort and got rid of it by switching to cortiment which is budesonude also but it acts on the colon.

For tapering entocort in a smooth way, take one capsule 3 mg on one day and on the other day take two tablets with a total of 6mg. If you add 3 and 6, this will be 9mg divided by 3=4.5 mg. You can stay on this dose for 2 weeks until you go down to 3mg.
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