Posted 9/25/2017 4:17 AM (GMT 0)
I just wanted to provide a bit of an update on my Remicade journey which I started on July 11, 2017.
I had my last loading dose on August 22. I experienced very mild improvements that lasted 10 days after the first two infusions and experienced no noticeable changes after the 3rd dose (last loading dose). I met the PA at my about a week after that last loading dose and told her I did not notice any changes and am having anywhere from 1 to 6 bowel movements a day, and about once or twice a week have an episode of "purging" BMs where I basically have horrific diarrhea for 4-8 hours straight with cramping that does not stop even once I'm empty ("dry heaving" BMs).
She suggested that we test Remicade trough levels and for antibodies to make sure there is no issue on either of those fronts, and even suggested we go to every 6 week infusions regardless of the results. She said she wanted to ask the MD if she wanted to run any other blood tests while I was there so she left the room and when she came back, she said the MD would not give the go ahead on the trough level and antibody tests and would not approve more frequent infusions unless my fecal calprotectin came back elevated (it came back borderline) and that she basically wanted to treat this as IBS.
Now they've made me an appt with the MD for Friday. My case manager at my insurance company also suggested that I get antibody and trough level tests done, which I plan to tell the MD at this appt and basically demand she do the tests at my next infusion.
Does anyone know why a doc would deny these tests given that they are basic blood tests that are non-invasive? Am I justified in demanding them at this point?