Hi everyone- I haven't posted in a bit, but here it is- my surgery was scheduled for next Wednesday, & 3 1/2 weeks ago I had a double dose of Remicade to try to stabilize me. I have been very ill... anyway, I had been getting Remicade infusions at the normal dose, 5mgs/per kg. So we upped the dose to 10mgs/kg, which has helped TREMENDOUSLY. In fact, I am so stable that I postponed the surgery indefinitely! Yay!!!!! I have another double dose infusion scheduled for December 3rd, which will be 7 weeks after the last one. If I start to become syptomatic, I plan to move it up to an earlier date. I've been told you can do the double dose as frequently as every 4 weeks. For the Remicade users out there, what dose are you getting, the 5mg/kg or 10mgs/kg? And how often are you getting infused? I'm wondering how long you can go on an large dose, 10mgs/kg every 4 weeks if need be, before other heatlh issues may arise. This will be my 6th infusion coming up, & I plan to continue on the Remicade as long as it helps. I have heard that some people need 6+ doses before they are put into remission- the first 3 doses worked wonders, then it suddenly stopped working. I did develop a major infection, strep pneumonia, & wound up in the hospital for a week, during which time they stopped my Imuran. I think that's when I started to develop antibodies to the Remicade. I'm hoping a few more double dose infusions will do the trick. Any info would be great! Thanks!
diagnosed with UC '02
Asacol- 8 tabs/day