Posted 9/21/2018 8:54 PM (GMT 0)
I started Remicade in July 2017 and stayed on Apriso/Canasa. I had a colonoscopy on November 1, 2017 (while still on prednisone as well) that confirmed endoscopic remission. At the end of June 2018 I mostly discontinued the Apriso/Canasa because my docs told me quite a while ago that I didn't need to be on it anymore since I was on Remicade. Well, 2 months later I've started a flare. Trough levels and antibodies tests indicate high levels of Remicade and no antibodies - i.e. primary nonresponder. I'm of the belief that the Remicade was never doing anything and it was the Apriso/Canasa keeping me in control that whole time.
Now, it would seem other anti-TNF options are useless since the reason for failure is primary non-response (rather than secondary). So, in order to get insurance to approve something else I have to get a colonoscopy to prove my flare (so far I've just had elevated sed rate, CRP tests and fecal calprotectin of 948). But the next scope appt isn't for a month so I have to go pay to get Remi on Monday even though we know it isn't doing anything, just so we can prove to the insurance that I was on it and failing when I get my colonoscopy in a month.
On top of this bureaucratic ridiculousness, I started a new job 3 months ago and only get 1 sick day per month and cannot use family leave or vacation until January. I'm on a quick pred taper but to be honest it doesn't seem to do much now or when I was on it before. So I can't rely on that to keep me functional in the meantime.