Faecal Calprotectin levels and starting Humira

Leanne Rachel

Regular Member

Joined : Nov 2014

Posts : 72

Posted 6/19/2018 2:51 AM (GMT 0)

Hi everyone,

I've been having a bit of a battle with my IBD team for a couple of months now as I had a colonoscopy in March after flaring for a few months. I felt so ill that I was fully prepared for an admittance/to push for biologics, but the colonoscopy only showed a few inches of rectal inflammation/a bit of redness near my appendix, but nothing else (despite how ill i felt). So i just got given Pentasa suppositories and was left to it.

My symptoms have been getting progressively worse since then with a lot more bleeding/fatigue/pain/urgency, but my GI wouldn't accept that I'm worse based on the fact that my colonoscopy 'wasn't that bad', and we only did a blood work a month ago which was ok. He eventually agreed to another stool sample and blood test on my request, and things are (unsurprisingly) a lot worse.

My Faecal Calprotectin levels are currently at 3600, which my nurse described as only 'slightly concerning'. Am I wrong in thinking that those levels are fairly high?

My IBD team have been pushing strongly for steroids, but I've refused considering my awful side effects in the past, and don't think Entocort would be enough to calm this down. My nurse is now talking to my GI to try and arrange for Humira, which I'm so happy about, but also quite scared!

I'm already on Azathioprine so the elevated risk of Cancer etc is worrying, but I feel so unwell that I'm willing to try anything new at this point. Any advice/reassurance or info for someone new to biologics would be very much appreciated!

Post Edited (LeanneRachel) : 6/18/2018 9:04:33 PM (GMT-6)

iPoop

Forum Moderator

Joined : Aug 2012

Posts : 16483

Posted 6/19/2018 12:49 PM (GMT 0)

Sorry you're getting the run-around with your gasteroenteroligists, but it sounds like you're being smart, and directing your care in the right direction. We shouldn't have to be our own best advocate for what we need to be well, but more often or not that is the case. Keep after them, until you're in a remission.

You should see positive results in 6-weeks or less with humira. There's risk in everything, but overall the benefits far outweight the risks wit these meds. I've been on remicade and 6mp (sister meds to humira and azathioprine) since 2012 and have yet to have a side effect from them. The cancer thing is a bit disconcerting, but putting the odds of it into perspective (less than 1% odds of lymphoma and 65% odds of it helping my UC) helped me greatly when first considering and then going on these meds. Overall the immunomodulator (azathioprine) is the most likely candidate for increasing those odds, and not the biologic itself according to a lot of newer research (everyone who got it during the biologic trials was concurrently on immunomodulators, no solo biologic users got it). The Crohn's and Colitis Foundation of America has a good watch/read on the odds of adverse side effects and of benefits:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

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