Confusing Calprotectin Levels - high but feeling fine

[mganendran]

Hi,
I was wondering if anyone could shed some light on my situation.

I was diagnosed with Crohn's of the terminal ileum just over a year ago and felt absolutely terrible, lost 2 stone, could barely eat anything etc. I was put on Budesonide and Azathioprine. I have now been on just Azathioprine (75mg) for about 6 months.

I have gained all my weight back, have gone back to work and am doing great. I really feel like I barely have Crohn's at all, and any discomfort or gurgling is minor.

However the hospital is keen to push me onto Humira because my Calprotectin levels are really high (around 800 which I understand is particularly high for the small bowel).

However, at a time when I was really ill and had been admitted to A&E with severe pain, diarrhea and vomiting, my calprotectin had been 469. How is it possible that it's now higher than ever, when I'm feeling so good?

Should I push for another MRI scan to monitor the progress, or I should I just accept going onto Humira in the expectation that my disease will probably relapse badly at some point assuming the inflammation is still ongoing inside even if I don't realise it? (My CRP has been normal for months but I've read that you can still have the disease simmering away in any case). Just for extra information, I always had a slightly unusual form as diarrhea was rare for me, and my main symptoms were vomiting and extreme pain.

Any advice would be greatly appreciated in navigating this very strange and unpredictable illness!

Thank you!
Melissa

 

[ronroush7]

Hi, Melissa. I would ask for another MRI. If things look bad, i would then go for the Humira. Besy to you.

 

[Scipio]

Symptoms don't always align with the severity of the underlying disease. Sometimes patients feel fine but the disease continues to smolder along, doing damage to the gut. Sometimes the bowel clears up and the disease gets into full remission but the patients still suffer from diarrhea or other symptoms.

Years ago docs used to just treat the symptoms, but studies eventually showed that patients were far better off in the long run if they targeted getting the bowel into full remission (as determined by colonoscopy and lab tests) than if they targeted simply making the patient feel better.

Not that the docs don't care whether you feel better. Of course they do. But they know that to truly get the upper hand with Crohn's they need to go beyond just clearing up the symptoms, hence the concern over your persistent high fecal calprotectin.

 

[mganendran]

Thank you ronroush and scipio, I really appreciate the replies. I spoke to my IBD nurse again and she confirmed that their team had already compared the last 2 MRIs and all agreed that they weren't happy with the progression.

I think I just have to accept that this disease is weird and that the symptoms don't always match what could be going on inside. I've decided to go ahead with the Humira as on balance, the risks of leaving it untreated and finding on later down the line that the damage is bad enough to cause complications and need surgery, is far greater than the risk of going on to biologics. Feeling a bit better now I've made the decision and put it in motion!

Thanks again

 

[ronroush7]

I hope the best for you.

 

[Anna's Bandit]

Thank you ronroush and scipio, I really appreciate the replies. I spoke to my IBD nurse again and she confirmed that their team had already compared the last 2 MRIs and all agreed that they weren't happy with the progression.

I think I just have to accept that this disease is weird and that the symptoms don't always match what could be going on inside. I've decided to go ahead with the Humira as on balance, the risks of leaving it untreated and finding on later down the line that the damage is bad enough to cause complications and need surgery, is far greater than the risk of going on to biologics. Feeling a bit better now I've made the decision and put it in motion!

Thanks again

Thanks for sharing. I will see my Gastroenterologists Family Nurse Practitioner on Monday to talk about my recent high calprotectin level. I honestly won't leave that office without an appointment for a colonoscopy /endoscopy, as I also fear that without such tests to see what is going on in my gut I won't get the right kind of treatment. :rosette1: