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I have been in remission for about 2 years on Stelara. However, I think it has recently stopped working. Previously I was on q4 week regimen, and after increasing to every 6-7 weeks I have had new symptoms. More frequent and liquid BMs, and sense of urgency. Now it's about 3-4 BMs per day. No stomach pain. The issue that I have encountered is that before entocort worked like magic, but now it has stopped working. Any thoughts on this? Previously entocort worked almost immediately. Now after restarting entocort the symptoms are improved, but only seems like 50% better.

my little penguin

Staff member
Inflammation load is probably higher which entocort can’t handle Or more of the intestine affected
With Ds he needed oral pred not entocort simple because of how much was affected (small and large intestine )
Can you switch back to q4 Stelara as well
Why did you move it out to q6/7?
Ds has stayed on q4 for two plus years now since it works
Well, the doctor recommended that I try to space it out to q6 since my inflammation was so well controlled. I also took some antibiotics a few months ago for a sinus infection...maybe that also had something to do with this? not sure. Yes, I switched back to q4 weeks stelara now. Hopefully it did not lose its effectiveness.

my little penguin

Staff member
Can they get you oral pred to take care of the inflammation until the Stelara kicks back in ?

I am sure at some point they will try to get Ds to “space “ his out more as well
He takes it for arthritis and crohns so that may be why they left things status quo for now
I'm wondering whether my flare is now in the distal colon rather the ileocecal area. Doctor said to continue trying entocort, but symptoms are not improving. The stool looks mucusy and like sand, not formed. Also, urgency and even leakage after bowel movements.
It's definitely not a severe flare, as I don't have much stomach pain. But the stool looks like sand. Weird thing is that all my inflammatory markers came back normal, normal ESR, CRP, and Calprotectin.