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Remicade Not Working?

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Ulcerative Colitis
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Posted 3/11/2017 3:12 AM (GMT 0)
Hey All!

So I started Remicade last October after a horrible flare that put me in the hospital four times. It worked, and allowed me to come off pred (thank god). I've been doing well on it up until this week. I've started to have some mucus, a slight increase in bowel movements, and blood returning. Granted it isn't much, but it seems to be getting mildly worse with each day. I visited my GI doctor today, and she doesn't want to do anything quite yet. My next infusion is in a little over a week, but a part of me can't help but wonder if I'll end up back in the hospital before then.

I just got back to the way I was before I was sick. I've lost all my pred weight, I'm looking good and feeling healthy again. I'm even in the middle of a "couch to 5k" interval training program (and loving it). I'm terrified Remicade may not be working anymore. I'm constantly worrying I'll be put back of pred, gain all the weight back, and have months worth of progress destroyed.

I guess I'm just looking for some support, and to see if anyone else has gone through this and has any advice to offer.

Thanks!
Posted 3/11/2017 3:21 AM (GMT 0)
sounds like it is still just a blip. i would seriously doubt that with the slow onset and mild symptoms you describe that you would crash in under a week. that sounds like just an anxious thought.

i am surprised your gi did not want to measure blood for Remicade levels and for antibodies. just a few days before your next infusion is the ideal time. - maybe ask for this bloodwork. it can even be drawn just before infusion.

you want answers so you can rest easy and/or make plans about net step. bloodwork is where answers are found.

good luck
Posted 3/11/2017 3:29 AM (GMT 0)
@DBwithUC,

It is most likely anxiety. I forgot to mention, they did do bloodwork but I'm not sure what exactly they were checking for. I think she mentioned WBC and electrolyte counts.
Posted 3/11/2017 4:34 AM (GMT 0)
there is one bloodtest for Remicade levels left in your blood, and another for Remicade antibodies. WBC and electrolytes and WBC don't cut it.

ask for these tests.

if your level are too low, you can get larger does of Remicade, or get doses more often.

if you are developing antibodies, it is much more likely Remicade will eventually stop working because you body is fighting it. But even in this case the rejection can be slowed by adding an immunosuppressant like 6mp or Imuran.
Posted 3/11/2017 4:40 AM (GMT 0)
Good to know, thanks for the advice.
Posted 3/11/2017 12:53 PM (GMT 0)
I agree with DB. I've been on remicade almost 3 years and I've had a couple of smaller flares while on. I had one full on flare as well. It was all around right after the one year mark that I struggled the most.

Since adding imuran things have improved. The good news is sometimes you just need to adjust your dosing or frequency of infusions. I moved up to every 6 weeks after my dr and I noticed a trend at it wearing off around weeks

Taking the Prometheus test should give you an indication of how your body is responding to the remicade.
Posted 3/11/2017 1:09 PM (GMT 0)
The test is called: Infliximab Concentration and Anti-infliximab Antibody. It's a simple blood test drawn 24-48 hours before your next remicade infusion. It checks for antibodies that your immune system has created against remicade (making remicade less effective). It measures how much remicade is within your blood 24 hours before your next infusion, a minimum concentration of medicine test. Based on these results, they can adjust your remicade dosage. The typical starting dosage is 5mgs per kilogram every 8 weeks. They can increase the dosage up to 10mgs per kilogram every 4 weeks.

Ask your doctor for the test before your next remi infusion occurs.
Posted 3/11/2017 5:17 PM (GMT 0)
Thanks all! I'm not sure why my doctor didn't order this. She's going to be out of town this next week, so not sure if I'll be able to get the test done. Going to look into it.
Posted 3/11/2017 7:45 PM (GMT 0)
good time to find another doc !
Posted 3/12/2017 12:38 AM (GMT 0)
A lot of people have symptoms toward the end of their infusion cycle. It is possible the infusion will get you back to remission. I think everyone is right, the blood test will give you info, but you might be able to wait this out and see how you do after the infusion. if you're back to 100%, it's possible you could do the infusions a little closer together to avoid having symptoms.
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