For my Crohn’s Disease and Arthritis I have Infliximab every six weeks. Most people are on it 18 months, I’ve been on it over ten years.
It’s desired effect has reduced so in the last few years so the amount has been doubled and the time between infusions shortened.
Clinical guidelines say a level of 8 is okay but above 12 has shown to have the best results and unfortunately as expected my levels have dropped from 13 over time so we’ve put a plan in place for when Infliximab stops working.
I have previously tried a drug called Ustekinemab but unfortunately it didn’t help my arthritis pain so that’s a no go so we have a plan in place for a different drug (can never remember it’s name) for when Infliximab stops working and I see my consultant in 6 weeks so we’ll discuss it further.
How Rare? 