Old Hat said...
Maybe Notsosickly can advise-- she may have info on L.A. area. If you look up ccfa there on the Web, they may have surgery/hospital info. Sorry to read that you're in a severe flare requiring hospitalization now. In the past a couple forum members have reported that cyclosporine got them out of hospitalization with severe flares; then they eventually opted for j-pouch surgery. / Old Hat (40+ yrs with left-sided UC)
I will ask my GI about
that. I am working with my IBD specialist at my Bay Area Kaiser, who is now consulting with the IBD specialist at West LA (they are both on CCFA), but neither has mentioned cyclosporine. They both are telling me that in their experience, there is very little likelihood that Xeljanz will work for me if the Stelara doesn't kick in because high doses of IV steroids won't even control the bleeding (let alone 60mg for weeks on end). They're concerned if we let this go on too long I am just going to keep needing transfusion after transfusion, which is risky, and they don't want me on such high doses of steroids for too long pre-surgery (prednisone at these doses also gives me excruciating body aches). Right now, they already know I am going to need a fourth transfusion, but the plan is for me to go in every few days to check my hemoglobin so we can *plan* one in the infusion center instead of me going to the ER. This last time I went in, I fell in the shower. My HGB was at 4.6 and no one could figure out how I was coherent and chatty. I was there for four days :\
I'm just so darn tired and emotionally all over the place right now.