Posted 5/31/2014 2:11 PM (GMT 0)
Have you had any recent tests to see if your Crohn's is still active? Steroid meds can mask a whole lot of evil.
Meanwhile, ask about doubling the Humira dose (1 shot a week instead of a fortnight) or switching to Remicade. Consider upping the methotrexate to 25mg, if you are taking less than that. And, finally, ask about switching from Entocort to Pred. Pred comes in 5mg and 1mg pills and you can taper it so much more gradually.
I suspect the Entocort is still mostly controlling your symptoms (but not your disease) and that's not good. In the past I always came off the steroids, and the symptoms would always return as I tapered down. I responded well to a high dose of steroids, but not well enough to obtain a sustained remission. This is an extremely common scenario with steroids and many people get caught in the trap of staying on steroids indefinitely to avoid the return of symptoms, which is a mistake. Such people end up steroid-dependent and facing steroid withdrawal symptoms on top of their disease's symptoms when they eventually attempt to wean off.
For this reason I do suggest a very slow taper for you, but I would also suggest accepting that Crohn's symptoms are highly likely to return unless you can find another med to put you into remission. You will have many other problems than Crohn's if you stay on a medium to high dose of steroids for years.
Finally, you might want to consider your non-medical options as well, such as special diets and surgery.