Entocort can be used for inflammation of the terminal ileum. It's targeted to work there with far lower side effects than prednisone. But, like prednisone, it's not a long-term solution.
Your situation brings up a lot of issues in the IBD treatment field regarding how medications are tested, how trials are run, what conclusions are drawn from those trials, etc.
The clinical trials used to test new medications to see how well they work, if they work at all, for both UC and for Crohn's focus on people with Crohn's in the colon and how well the drugs work there. The models of how the immune system is misbehaving in Crohn's and UC are based on interaction of the epithelial immune system with the bacteria in the colon. The understanding of how these drugs help is based on those models.
But Crohn's in the small bowel might be a little different. The terminal ileum has far less bacteria than the colon. The rest of the small bowel is nearly sterile. So the models for immunology in the colon don't entirely apply. The drugs that get approval get that approval based on how well they improve the colon. I haven't seen any good explanations (immunologically speaking) for what goes awry in small bowel Crohn's. And I haven't seen any good data on which meds are most likely to help small bowel Crohn's.
I wonder - but don't know the answer - if meds like Stelara (and its related drugs, Skyrizi and Tremfya), work well in the colon but not so well for Crohn's infllammation higher up the digestive tract (small bowel, stomach).
There seems to be a big hole in the knowledge/data/understanding of which drugs work best in small bowel Crohn's.
It may be that Stelara is working great for you for you inflammation in the colon, but that the inflammation in your terminal ileum has a different underlying etiology, and Stelara doesn't help there. That's speculation on my part, I should be clear.
So increasing frequency of Stelara may or may not help you there. Like I said, there's a lack of data.
I'm in a somewhat similar boat right now (on Stelara, it seems to be helping colon but might not be helping my crohn's in the stomach, duodenum, and small bowel).
There was recently some very limited talk at a conference that anti-TNFs like Remicade or jak inhibitors like Rinvoq might be a better choice than Stelara/Skyrizi/Tremfya when the small bowel is involved. But again, there's a huge lack of data on this as far as I can see.
That's my current take on this, as I said, I'm in a similar situation and have been thinking about
this a lot lately.
Post Edited (beave) : 1/29/2025 11:29:55 PM (GMT-5)