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I'm in a research study measuring calprotectin (FCP) in the stool as a predictor of a flare

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Ulcerative Colitis
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Posted 2/20/2011 4:41 PM (GMT 0)
my gi dr's office is taking part of a study out of Univ of PA.  Basically there is a molecule called calprotectin which can be measured in the stool of patients with UC.  High levels of this molecule are seen when there is inflammation.  sometimes even with no symptoms you can still have high levels of calprotectin.  a few studies suggest that people with high levels of calprotectin are more likely to have a relapse of uc.  The clinical trial will determine whether increasing lialda can reduce levels of calprotectin.

I gave a stool sample, my level of calprotectin (fcp) was 65 mcg, so they increased my lialda dose from 2 ( i was in remission at the time) to 4.  I just have to give stool samples at 6 weeks and 12 weeks.

the funny thing is i was doing great, in remission for all intents and purposes and about 1 week before i started with this clinical trial i started going back into a mild flare.....the 4 lialda are not making a difference, but some food tweaking (trying to avoid glutens, etc seems to help)

thought you guys may be interested in this

Posted 2/20/2011 7:03 PM (GMT 0)
Hi..interesting. Why were you not put on rectal meds as well?

q
Posted 2/20/2011 7:20 PM (GMT 0)
Thanks for sharing with us! I love to hear about research and new lines of thought that are being pursued.

And that some of us are in these trials.... wow, we are part of medical history! We are important, my fellow UC sufferers! :-)

It stinks that your gut started to act up .... does that affect how you participate in the study?
Posted 2/21/2011 2:16 AM (GMT 0)
My gastro is also an IBD researcher & brought the calprotectin issue up last spring. I didn't think it was worthwhile for me. At this point 3 decades post-diagnosis I can tell pretty quickly if a flare starts. The study may help gastros to medicate newly-diagnosed UCers better, though-- if it turns out to be a reliable predictor of relapse. That would likely lead the gastro to recommend higher Rx-dosing or immunosuppressants early on, I would imagine. It's something for them to look at, but I wouldn't consider it to be any major breakthrough! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 3/1/2011 8:25 PM (GMT 0)
OMG I am doing the same study!! lol Do you happen to go to south jersey gastro?? I just got my results back today and my levels were 2,200 and so more lialda will be here tomorrow..im currently taking 2 a day and i wonder what they will up it to. Its nice to know that others are out there helping with research studys!!!
Posted 3/15/2011 5:56 PM (GMT 0)

yes reenygurl, sj gastro, lol

Quincy: I am already on rowasa. I was doing it nightly until remission in Nov.  From Nov to dec I tapered down rowasa to 2x a week and then in Jan I stopped them (i know this is not rec by some here but i was feeling GREAT) Well by Feb I started having a mild flare (right after the study started) and restarted my rowasa nightly.  I spoke to the study coordinator about all of this.  Well now I am due for the 6 week stool sample and they are very interested to see what my results are. Since my first stool sample was taken when I thought i was in remission and had no symptoms and now this stool sample will be taken when I am in a mild flare.  The numbers should be interesting.

OLd HAt:  I have had this diagnosis for 20 years and I do not have any signs that a flare is going to start, I just have symptoms one day and then I am uh oh.  I think this may help someone down the line.

I will keep you all posted.

Posted 3/15/2011 6:01 PM (GMT 0)
Yes, I'm looking forward to the numbers as well...thanks again for sharing the info!!

q
Posted 3/30/2011 5:59 PM (GMT 0)
I got the results of my FCP levels , at the 6 mark point of this study.  They were 44!!!!

 

THis is weird for a few reasons:

1. my first stool sample was taken when i thought i was in remission, and it was 65! (the meds i was on at the time were 2 lialda a day)

2.  My second stool sample was taken when i was in a mild flare up, blood in my stool, etc.  Why would my number go down to 44???? Isn't that weird?  The only other difference is the meds i have been on for 6 weeks, 4 lialda a day and nearly nightly rowasa. 

 

The study coordinator tells me that my numbers are really good for someone who feels as poorly as I do now.

 

Btw, I am not officially in the study anymore becasue I am flaring and had to add the rowasa,  however, they are still using me for observational purposes.

 

Oh and I seem to be improving, nightly rowasa and giving up coffee are whats helping. I have come to the sad conclusion that i can not drink coffee at all while flaring!!  I think its been a week or so with no blood in my stool, yay!!!

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