CCinPA said...
The idea of something working within a few days is very appealing, Keith. Did that work for you prior to your surgery or just for the pouchitis? Stelara hasn't been approved for UC yet and I don't have a definitive diagnosis as to whether it's UC or Crohn's (Scope in June seemed to be leaning more towards UC) so it would likely be a battle with insurance and more delays in getting a treatment that works.
I don't have a lot of faith in my current GI. He didn't even know that there was a blood test to check Entyvio levels until I told him and insisted on getting it checked so that the dosage could be increased last March. It still took me until July to convince them to do the test. I really feel like the bad flare now is related to that 4 month delay in modifying treatment. I just kept getting worse. Not saying that the increase of Entyvio would have worked or that Humira would be working better. But I am saying that I don't think I would be this bad now and at the very least I could already be on a med that works better for me.
Sorry if I wasn't clear. I had to stop Stelara for 6 month due to surgery for my hip replacement (thanks Prednisone) and NOT for my j-pouch surgeries. I started Stelara about
10 months prior to my hip surgery.
There is no drug FDA approved for pouchitis; it is all off-label. I started Stelara for the pouchitis. If you failed Humira and Entyvio then you have a good case to move on to Stelara. If your GI is offering to do the leg work then I'd consider taking your GI up on the offer.
I have two GIs (one is my primary care doc) and they both are down on entyvio's effectiveness. One said "if it works" like he hasn't had much success with Entyvio. My IBD specialist GI raves about
Stelara and has all these stories that he tells about
his patients that are currently on it. He just recently did the scope on my pouch and was very impressed with it. I recently had a thread about
j-pouch scope.
I did the Prometheus test for Stelara and my GI and his office didn't how Prometheus' new patient assistance system worked if my insurance company rejected the $2,500 claim. I'm still fighting it out.