Anyone Have A Hard Time Weaning Off Entocort?

[LodgeLady]

Since my Crohn's diagnosis is still in question, the specialist suggested I stop the Entocort. He said there is very little left stored at the end of the day and said I could stop cold turkey at my current 9mg (3 pills). My regular GI suggested 2weeks at 6mg (2pills) then 3mg (1 pill) for 2 weeks.

So I chose a timeframe in the middle. If there's no Crohn's it should be a quick wean, right? I went to 6 mg for 4 days then tried to wean to 3 mg. after day two of 3 mg cramping and abdominal pain reared it's head with D. So I upped myself back to 6 mg ( took a second pill early afternoon).

Questions... Is it just too fast? If there is no suspicion of Crohn's ( still have pill cam left to do) in this specialist opinion, would I still have these symptoms?

What if I can't get off it?

 

[Patricia56]

Bad words. Any doctor that suggests you stop a steroid medication cold turkey should be taken out and shot IMHO.

Even the schedule your GI suggested may be too fast. Up to 20% of Entocort can be absorbed systemically so yes you will need to wean off it. How fast you go depends on your symptoms - both CD and weaning symptoms.

You may want to split the dose into morning and late afternoon to see if that makes a difference.

 

[nogutsnoglory]

Honestly everyone is different. Personally I have been able to come off of entocort very quickly. Doing a 6mg for a week and then 3-4 days of the 3mg. I have done various cycles of taper but generally felt fine coming off fast. Others will tell you a completely different story. Do what's right for you in conjunction with doctors orders.