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Flaring after coming off pred

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Ulcerative Colitis
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Posted 5/6/2019 11:16 AM (GMT -5)
I took my last dose of prednisone on 4/24 and had my last loading dose of remicade on 4/26. My next dose of remi is scheduled for 6/21.

I had been in symptomatic remission while on the prednisone but since last week (5/1) stools are now just pebbles or pencil thin and since Friday I see visible blood sporadically (both when I wipe and mixed in with the stool). Frequency has not increased (2-3x/day), no urgency or anything else.

Does this mean that remicade is not working for me or is there still a chance that it will kick in and get me back to symptomatic remission? So bummed to be back sliding into a flare again.
Posted 5/6/2019 12:01 PM (GMT -5)
I'd contact your gasteroenteroligist asap and describe the blood and other changes you've seen.

It could be that remicade needs more time to work, or that you need a stronger dosage of remicade. Often we start at 5-mgs per kilogram, every 8-weeks on remicade dosing. And the dosage can be 5mgs per kilogram or 10mgs per kilogram. Remicade frequency can be every 8, 6, or 4 weeks. The maximum is 10-mgs per kilogram every 4 weeks.

Since you are now on the maintenance schedule, they can do a remicade concentration and antibody test (usually just before next scheduled dosage) and see what your levels are. Too low, it's a good reason to get a stronger dosage or have the infusions closer together.
Posted 5/6/2019 12:24 PM (GMT -5)
GI is going to do lab tests (SED, CRP, CBC & Fecal calprotectin (sp?)) to determine if this is a "true flare" whatever that means. I know I am flaring. I will have to wait until the end of June to get the remi levels checked before my first maintenance dose.

I just hope that remi starts kicking in because I don't want to lose another summer to a flare and waiting to do tests. I was in a flare for a year and a half before starting remicade and things were pretty severe when I started on the prednisone right before I started remicade earlier this year.

Could use some good thoughts directed my way that the remi works!
Posted 5/6/2019 12:40 PM (GMT -5)
Oh gosh i flared almost exactly the same day as you one year ago after my 3rd loading dose and the hospital made me wait until the next infusion before changing anything so that they could measure the drug level. In the mean time they did tons of tests including ultrasound, urine samples, c diff twice...eventually an emergency colonoscopy ("Can you come tomorrow afternoon? ") I got so fed up of waiting i actually self -medicated which meant putting myself back on mesalazine that they had stopped. You could consider taking low dose of pred if it becomes uncomfortable. I hope you feel better soon either way!
Posted 5/6/2019 4:05 PM (GMT -5)
I am sorry you're stressed. Positive thoughts that you will start getting better!

Maybe after you get the test results, if they aren't ideal, you can move the infusion up, or double the dose. You're just going to have to wait and see, but you have other options, so just take it one day at a time. I hope for good news from you soon.
Posted 5/6/2019 5:13 PM (GMT -5)
Thanks all! I am trying to stay positive, but I have to admit it's so depressing to be flaring less than 2 weeks after the 3rd infusion. Once I get the test results I hope my doc will be open to doing something sooner rather than later.

Om Saturday I had a reminder of a time years ago when I experienced a true miracle (long story and not related at all to UC) so I am hopeful it was a sign that a miracle is heading my way.
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