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Ulcerative Colitis
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Posted 11/23/2015 7:20 PM (GMT 0)
So I've been in a flare of hell as of the last 2 months or so, prednisone won't help I'm running to the bathroom every hour and just overall I've been house bound, forced to work from home.

I had my first remicade infusion on September 10th, the 2nd the 24th and the 3rd October 19th and I just got my Remicade levels checked. There are no antibodies and no trace of Remicade in my system. Has this ever happened to anyone that even after the induction phase, there was no trace of medicine? I go in for a double dose next week and hope that that will do something, but I find this odd.

Any past experiences please let me know.

Thanks,
M
Posted 11/23/2015 8:01 PM (GMT 0)
Are you seeing results? I didn't bother having the levels checked but I wouldn't be surprised if my result was the same. it was as if I never had any medication when I was infused with Remicade, I just got sicker...
Posted 11/23/2015 8:41 PM (GMT 0)
No results at all. But I'm surprised that the medicine isn't even getting into my blood levels. I didn't see much improvement from Imuran, but at least I know it's in my blood since the medicine levels checked out at therapeutic range.
Posted 11/23/2015 8:46 PM (GMT 0)
I had to use allopurinol to get 6mp to show up without toxicity to my liver. I never responded properly to anything. What will you do from here? Hopefully you respond better to something else or to the double dose. I tried Simponi before Remicade and I had absolutely no response to that either, nor did I respond to Entyvio. Of course, my experience is quite rare. Most people have luck with something.
Posted 11/23/2015 9:21 PM (GMT 0)
If your remicade levels are zero then that means one of two things. Either all of the remicade is used up before the next infusion (dose is too low), or your body is flushing remicade out of your veins before the next infusion takes place (some are more efficient at that than others). Both are solved by pushing the dosages closer together (from 8 weeks to 6 or even 4 weeks) and/or increasing the dose (from 5mgs/kg to 7.5 or 10)

Essentially, one remicade protein binds to one tnf-alpha protein (created by your immune system) in your blood, they become inert, and then they both pass out of your body without tnf-alpha signaling inflammation in that one instance. You've got to have enough remicade proteins in your bloodstream to make it between infusions. If you don't, then your concentration reads zero, the immune system wins and uc symptoms return.

Was the remicade level/concentration read just before your 4th dose? Usually, they are done within 24 hours before your next, scheduled infusion.
Posted 11/23/2015 9:30 PM (GMT 0)
I go in for a 4th infusion next week at 10mg/kg and hope that works. Else I'm going through the insurance approval process for Entyvio. If that doesn't work, I have a consultation scheduled with a surgeon on December 4th.
Posted 11/23/2015 9:32 PM (GMT 0)
It sounds like you have a good plan going forward. Good luck!
Posted 11/23/2015 9:44 PM (GMT 0)
yup increasing dosage and or frequency is the way to go. because the drug is working but you dont have enough to last you all the way through. its common for many UCers and many of us need to double our dose...

I dont think entyvio is even a question now becuase you cant say remicade is not working if there is not enough in your system
ask your doc if he can move your infusion up even sooner as there is none of the medicine in your body
good luck
Posted 11/23/2015 9:45 PM (GMT 0)
Had my IFX level checked recently at the 6 week mark and scored 4.9mg/L which is apparently low. Was immediately bumped to 4 weekly infusions and am due for another level check in 2 weeks to see if the value increases.
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