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My Calprotectin level is above 10,000

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Ulcerative Colitis
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Posted 12/4/2015 3:46 PM (GMT 0)
I'm in the hospital. They are giving me IV... For being underweight I guess. They also plan to give me Immuran and Prednisone.
Posted 12/4/2015 5:41 PM (GMT 0)
wish you the best, imuran worked far better than prednisone for me but you have to have patience with it.
Posted 12/4/2015 9:41 PM (GMT 0)
They say that immuran starts working after 3 months and that you have to take Prednisone until then. Unfortunately Prednisone causes me MAJOR acne. It suucks.
Posted 12/6/2015 5:14 AM (GMT 0)

emilp89 said...
They say that immuran starts working after 3 months and that you have to take Prednisone until then. Unfortunately Prednisone causes me MAJOR acne. It suucks.

Yup, i'll take acne over staying awake for a whole month from the pred smilewinkgrin
Posted 12/6/2015 7:11 AM (GMT 0)

Dreadsteel said...

emilp89 said...
They say that immuran starts working after 3 months and that you have to take Prednisone until then. Unfortunately Prednisone causes me MAJOR acne. It suucks.

Yup, i'll take acne over staying awake for a whole month from the pred smilewinkgrin

Then you din't know my reaction to prednisone when it comes to acne :). If I get the same "attack" as before, I'll be treating it for the next year and a half. If I get the chance, I will take a photo of my back and post it here.
Posted 12/6/2015 12:34 PM (GMT 0)
Good luck.
Posted 12/6/2015 8:45 PM (GMT 0)

Dikid said...
Good luck.

Thank you. The best thing about this is the stress free environment. Helps a lot I think.
Posted 12/7/2015 12:00 AM (GMT 0)
Puno sreće :)
Posted 12/7/2015 4:35 PM (GMT 0)
Hvala lepo.

Dakujem pekne.

:)
Posted 3/20/2017 5:50 PM (GMT 0)
Okay, so my highest is at 775 and my doctor is telling me if it gets any higher and I don't start Entyvio NOW, it won't work and I will have to have my colon removed. What the heck?? Here's the thing, I feel GREAT right now, but I am on Imuran and Prednisone and LDN. Last test was 680 and I'm waiting for the results of the one I submitted last week. Fingers crossed.
Posted 3/20/2017 5:59 PM (GMT 0)
emilp89 - So, did they ever uncover the cause of your astronomically high calprotectin? Please let us know what happened in the hospital if you see this.

Sorry, Trixy, I just read your post. Your GI can't remove your colon solely on the basis of a high FC result, thats ridiculous. Ask him what his other reasons are for wanting to remove your colon; there have to be some.
Posted 3/20/2017 6:16 PM (GMT 0)
cupoftea: he's afraid if I want too much longer and the inflammation gets worse, the meds won't work by time they kick in and I will flare up and won't be able to get it under control and I'll lose my colon. That's his basis. I swear they are trying to scare me into taking a medication I am not comfortable taking.
Posted 3/21/2017 12:29 AM (GMT 0)
I'd insist on a scope (colonscopy or flexible-sigmoidoscopy) before making a big decision. Especially if there appears to be a disconnect between symptoms and inflammation.
Posted 3/21/2017 2:20 AM (GMT 0)
I'm just going to throw out there that my fecal calprotectin was 13,000 in 2013 with a mild to moderate flare and 17,000 a month ago during a severe flare. Both times I was told I am "off the charts".

Based solely on my calprotectin test and symptoms, I would have had my colon out. But with the first flare I had a colonoscopy that showed mild/moderate inflammation and I started Remicaid and Rowasa.

This time, I started responding to Prednisone and Humira and an MRI last Friday showed mild inflammation (thanks Humira!)

So I guess my point is that one test shouldn't decide the fate of your colon.
Posted 3/21/2017 2:27 AM (GMT 0)

Trixy's Got Butt Trouble said...
Okay, so my highest is at 775 and my doctor is telling me if it gets any higher and I don't start Entyvio NOW, it won't work and I will have to have my colon removed. What the heck?? Here's the thing, I feel GREAT right now, but I am on Imuran and Prednisone and LDN. Last test was 680 and I'm waiting for the results of the one I submitted last week. Fingers crossed.

The actual numbers don't matter that much. If you are above the cut off (depends on lab), then you have intestinal inflammation assuming the test is accurate. The numbers don't really matter so the difference between 600-700 is not significant--you are flaring either way.

When I had one that was greater than 2000---it was a very mild flare.

I would look at your symptoms and the results of your scope to judge severity of the flare and not the fecal calproctein values. They are confirming that you are still in a flare though but not the severity of it.
Posted 3/21/2017 10:45 PM (GMT 0)
i once had my calprotectin results 'off the chart' while i wasn't flaring and the sigmo showed Mayo 0, that's why i don't believe this test at all. One imbecile GI threatened me then that i would have a major flare within a very short time. However almost 5 years have passed and i'm still in remission
Posted 3/21/2017 11:04 PM (GMT 0)
Thanks, guys. Makes me feel better. At least I can go there during my next appt with examples of others and ask for a scope before making a huge decision.
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