Posted 2/20/2021 8:46 AM (GMT -7)
Hi, i flared after my 3rd infusion too, while tapering pred. I'd got down to 5mg when it happened. The hospital acted like they'd never seen that before, so it took 6 weeks to convince them it was really a flare, then they did an emergency colonoscopy the next day which confirmed severe distal inflammation. So then immediately before my 4th infusion (which was still 8 weeks after the 3rd, as planned), they measured my blood levels of infliximab and gave a double dose of infliximab (i.e. 10 mg/kg rather than 5mg/kg). My blood results showed that blood levels were therapeutic and no antibodies to infliximab, so we continued for the double dose for another infusion after that, but my symptoms did not improve enough to justify continuing so I then switched to entyvio.
I chose not to increase the pred above 5mg as I'd been on it for 18 months by that point and this was the first time I'd got below 15mg without flaring. Later I found out I had severe osteoporosis from the pred so I'm glad I didn't increase it at that stage. But it's a personal choice. I opted to take the lowest dose for the maximum level of symptoms I could tolerate.