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KS1905 high calprectin

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Ulcerative Colitis
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Posted 10/14/2021 9:01 PM (GMT 0)
I read you had high numbers before, how high? Mine are high , but I just got over covid and couldn’t keep down medication at either end, now I’m back on and feeling pretty good.
I’m sure they will call me in for a scope
Thanks
Linda
Posted 10/15/2021 12:15 PM (GMT 0)
I am unsure, it was probably when I was on a lower dose of Stelara and it was not controlling my symptoms. It feels like a lifetime ago and I just can’t remember - my IBD has been well controlled since I got on the right dose of Stelara. My blood work is currently very good.

I’ve always been of the mindset that my IBD is aggressive so I need to be very aggressive in my treatments of it; life is too short.
Posted 10/15/2021 12:36 PM (GMT 0)
Just got back greater than 8000!

I’m petrified.
Posted 10/17/2021 4:19 AM (GMT 0)
Mine has been 4000 with mild inflammation on colonoscopy
Posted 10/17/2021 6:02 AM (GMT 0)
Keith, is Dr. S. big on calprotectin testing-- or is he satisfied with blood test markers for inflammation? / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 10/17/2021 1:01 PM (GMT 0)

Old Hat said...
Keith, is Dr. S. big on calprotectin testing-- or is he satisfied with blood test markers for inflammation? / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

His big thing is how does the patient feel and how they look during their visits.

When talking about my blood work he usually references the sed rate first.
Posted 10/17/2021 9:19 PM (GMT 0)
Thanks, Keith. I suspect that calprotectin test was originally the brainchild of a U. of PA IBD gastro. I first heard about its use from a very sharp NP my gastro had ca. 2011. She said it was becoming a new "standard of care" for IBD patients. Probably testing it makes more sense in the case of newbies, though, who lack experience in relating symptoms to onset of flaring. Additionally, I've noticed here on the forum that some more recent members posted about changes reported in their calprotectin level NOT corresponding with onset or worsening of their flares. So-- like Dr. S. I will still pay attention to the ESR! (During one remission mine actually dipped to a 4, which really pleased my IBD MD!) / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 10/17/2021 11:23 PM (GMT 0)
Calprotectin depends not only on severity of inflammation but the location. Basically the closer the inflammation to the anus, the higher the value.
During my last flare I had 4 scopes in 18 months and the calprotectin correlated very strongly with the severity of my flare (while my symptoms did not) BUT I have a textbook classic case of UC i.e. worst inflammation always in the rectum, becoming less severe the further along the colon you go. As I went into remission last time, I made a poop chart plotting number of daily bowel movements. I added a second line with calprotectin values (my Gi let me test it every 1-4 weeks because he wanted to get an accurate picture of what was going on in my bowel). The calprotectin line and the poop line tracked each other really closely. He now uses that chart in his lectures to the medical students 😂
My sister with crohns only has inflammation in her transverse colon and so her calprotectin readings are not helpful. She gets a better picture from CRP (blood test). My CRP and blood markers are always normal.
Calprotectin values vary throughout the day, being highest with the first BM of the day as there has generally been more time to accumulate the stuff overnight. So if you want to be scientific always choose the same #BM each time to get your sample. I try to get my first BM of the day to know my worst case scenario.
During my last flare i typically had values in the range 1000-2000. In remission it has been as low as <5 (i.e. beyond the sensitivity of the lab instruments).
Posted 10/18/2021 2:23 AM (GMT 0)

poopydoop said...
Calprotectin depends not only on severity of inflammation but the location. Basically the closer the inflammation to the anus, the higher the value.
During my last flare I had 4 scopes in 18 months and the calprotectin correlated very strongly with the severity of my flare (while my symptoms did not) BUT I have a textbook classic case of UC i.e. worst inflammation always in the rectum, becoming less severe the further along the colon you go. As I went into remission last time, I made a poop chart plotting number of daily bowel movements. I added a second line with calprotectin values (my Gi let me test it every 1-4 weeks because he wanted to get an accurate picture of what was going on in my bowel). The calprotectin line and the poop line tracked each other really closely. He now uses that chart in his lectures to the medical students 😂
My sister with crohns only has inflammation in her transverse colon and so her calprotectin readings are not helpful. She gets a better picture from CRP (blood test). My CRP and blood markers are always normal.
Calprotectin values vary throughout the day, being highest with the first BM of the day as there has generally been more time to accumulate the stuff overnight. So if you want to be scientific always choose the same #BM each time to get your sample. I try to get my first BM of the day to know my worst case scenario.
During my last flare i typically had values in the range 1000-2000. In remission it has been as low as <5 (i.e. beyond the sensitivity of the lab instruments).

Maybe my GI doesn’t focus too much on the Calprotecin values because I no longer have a colon due to my jpouch in 2013. My symptoms have been pretty good since I’ve been on Stelara at the IBD dose.
Posted 10/18/2021 10:41 PM (GMT 0)
Thanks very much, Poopydoop, for that interesting info.!!!! Really enlightening!!!! It's annoying when doctors expect us to follow through with tests though they don't have or take time to explain what is being assessed and why it's relevant to our health condition. Glad you can get more detailed communication from your doc, and could share it here. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 10/19/2021 4:46 AM (GMT 0)
I never liked the calprotectin tests much. They aren't always reliable for me and they're expensive. But my bloodwork is hardly ever abnormal so I guess it's more helpful for me than that. L
Posted 10/19/2021 2:41 PM (GMT 0)

Old Hat said...
Thanks very much, Poopydoop, for that interesting info.!!!! Really enlightening!!!! It's annoying when doctors expect us to follow through with tests though they don't have or take time to explain what is being assessed and why it's relevant to our health condition. Glad you can get more detailed communication from your doc, and could share it here. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

When Dr. S writes a script he does it for a few dozen different bloodwork tests. He never explains them to me unless they are off and he is concerned about them. Sometimes I ask for certain tests like b-12 or testosterone levels if I feel extra tired.
Posted 11/8/2021 4:35 PM (GMT 0)

poopydoop said...
Calprotectin depends not only on severity of inflammation but the location. Basically the closer the inflammation to the anus, the higher the value.
During my last flare I had 4 scopes in 18 months and the calprotectin correlated very strongly with the severity of my flare (while my symptoms did not) BUT I have a textbook classic case of UC i.e. worst inflammation always in the rectum, becoming less severe the further along the colon you go. As I went into remission last time, I made a poop chart plotting number of daily bowel movements. I added a second line with calprotectin values (my Gi let me test it every 1-4 weeks because he wanted to get an accurate picture of what was going on in my bowel). The calprotectin line and the poop line tracked each other really closely. He now uses that chart in his lectures to the medical students 😂
My sister with crohns only has inflammation in her transverse colon and so her calprotectin readings are not helpful. She gets a better picture from CRP (blood test). My CRP and blood markers are always normal.
Calprotectin values vary throughout the day, being highest with the first BM of the day as there has generally been more time to accumulate the stuff overnight. So if you want to be scientific always choose the same #BM each time to get your sample. I try to get my first BM of the day to know my worst case scenario.
During my last flare i typically had values in the range 1000-2000. In remission it has been as low as <5 (i.e. beyond the sensitivity of the lab instruments).

This is so odd. My GI specifically said that CP values do not indicate where the inflammation is. And location does not cause it to rise. A high figure only has to do with the amount of inflammation. Also he said that above the cut off range which is 50 I think every thing is high. So it would be irrelevant if it was 100 or 8000 so to speak😨
Posted 11/8/2021 7:28 PM (GMT 0)
Broadly speaking there seems to be two camps - those whose inflammatory marker blood test results can indicate inflammation reasonably accurately, and those whose inflammatory markers (blood tests) don't tend to rise with inflammation.

I fall in the second camp. My ESR doesn't rise even when I have severe inflammation in my colon, and I was warned by the gastro who diagnosed me to remember this. For example, I always mention this in A&E to non-gastros so they don't just check my ESR and send me home.

Even when I've been close to having my bowel removed on several occasions my CRP has barely risen and my ESR has been normal.Therefore for me a faecal calprotectin test is the most useful indicator of inflammation in my bowel.

Contrary to Seeker275's GI's advice, my faecal calprotectin result does give me a reasonably good indication of whether I'm heading towards remission or in a major flare up. When my faecal cal is at 800 (for example) I tend to be less flared up than when it's at 4000, and when I'm under 50 (it does happen sometimes) I consider myself to be in remission.
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