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Remicade/Inflectra issue

I was officially diagnosed with Crohn's in September 2017 though I had been having issues long before that. Apparently my threshold for 'normal' went by the wayside a few years ago. I was initially put on Remicade and within a few weeks I saw what I had been missing... a life. When I initially got the diagnosis and the doctor prescribed the meds, he sent me to a different office to actually get the meds and said that they would administer the drug but if I had issues, to go back to him. He wanted a follow up after 3 months and I was on my way.

In December 2017 they said that they would be switching to Inflectra and that there was really no change in the actual medication except for the name - that's certainly how I understood it and bad for me, I didn't actually check with my gastro dr as I assumed that his office would have been notified. My first Inflectra infusion was January followed by March. By February, I was apparently starting to backslide with the amount of times I was going to the bathroom and hadn't been 'normal' long enough for 'normal' to be a habit that I noticed.

I finally went into the doctor in April and he put me back on Remicade. That didn't work well so when I went back 6 weeks later, he had me get another Remicade infusion at 6 weeks instead of 8 to see if that would help. It didn't.

I started Whole30 and have been following it fairly well and my blood pressure and cholesterol have gone down but no matter what I eat, I have diarrhea. Good or bad - always very watery diarrhea. Always... about 9 times per day with 4 to 5 of those being quite urgent.

I went back into the doctor on 7/31/18 and he said he can't really do anything. I went on vacation on 8/3/18 and as I'm sure you all know - that's super fun. The only way I was able to really do anything was if I did it in the morning and didn't eat. He just said he wants me to do my next infusion (on 8/27/18) and then come in for another colonoscopy on 9/14/18.

I'm trying to research as much as I can but there is so much out there! I do see that possibly the biggest issue was the change of meds, even though it was apparently the same med (which I'm finding it's really not).

Any suggestions would be so appreciated :)
 

Scipio

Well-known member
Location
San Diego
If you haven't already, you should ask your doctor to check your blood levels of Remicade and whether or not you have developed antibodies against the Remicade. Your situation may or may not have been triggered by the drug switch, but it is consistent with a loss of response to the drug due to the development of antibodies.

If you have developed antibodies and/or have unexpectedly low levels of Remicade in your blood, there are a couple of different things your doc can try. First they usually try dose intensification - give a higher dose or and/or give a dose more often to see if the antibodies can be overpowered that way. If not you can consider switching to another biologic such as Humira, Entyvio, or Stelara.

If your doc continues to say he can't really do anything you may wish to consult another GI. There is a lot they can do when faced with loss of response.
 
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