Calprotectin levels >6000

[belindasteyn]

My son (14) has been diagnosed with Crohn's 5 years ago. His initial Calprotectin levels were between 2000 and 3000. After a year and a half of Prednisone, Salazopyrin and Entocort his levels shot up to over 6000 (literally off the chart). The doctor ordered another test assuming that it was a false positive but the result was the same. My son started Humira and his levels was the lowest at 2500 before it shot up to >6000 again. Then he was switched over to Stelara and his levels came down to about 5000 after 6 months. It went back to >6000 again and he is going to start Entyvio as soon as we get approval from the insurance. What I actually want to know is if there is anyone who had Calprotectin levels this high. My son has been to 3 doctors - none of them can explain this ridiculous high result. His latest test is the 5th test with a number >6000 - it cannot be all false positives. I would also like to mention that I do use a sterile container and I take the stool sample immediately to the labs.

 

[my little penguin]

So other question
How do his scopes look when it’s that high ?
MRE imaging ?
Pill cam ?

what frequency was he on for humira ?
It can go to 20 mg every 5 days
What dose frequency for stelara ?
Again highest dose would be 90 mg every 4 weeks
Did they add een (formula only ) while waiting for Stelara to work ?
It can take an average of 8 months to work
Did they add methotrexate with any of the above therapies ?

beforeswitching again you need to know if you maxed out the med
Entyvio can take upwards of 12-24 months to work so it’s very important to make sure each drug was given enough time

some kiddos need steriods ,biologics , een and methotrexate all at high levels abd frequency.

what about high dose remicade (10-20 mg) every 4 weeks ??

tagging other parents as well

@crohnsinct
@pdx
@Pilgrim

 

[Pilgrim]

I am another high levels parent. One of my kids with Crohn's has often shown levels between 3000 and 6000.

It is definitely an indicator of high disease activity for her, and sometimes the only indicator. It has meant medication adjustments. However, time is always spent on each medication increasing the dose or frequency, sometimes adding steroids or an immune modulator or EEN to help the medication work. This way we don't run through the options too fast.

If it has been 5 years for your son they may have done time on each med. My daughter is 10 and diagnosed at 3 so it's been 7 years for her. We spent many years on Humira and are trying Stelara. She tends to need very high doses. Stelara has brought her Calprotectin down to 1500 but we are hoping a higher frequency (4 week) dosing will help reduce it further.

Did you get high dosing on any meds?

 

[belindasteyn]

The scope did show inflammation in lower part of colon. Methotrexate was added to Humira. Both Humira and Stelara have been maxed out. Remicade was not considered because it falls in the same class as Humira. According to his doctor, if Humira failed, Remicade will not be a good option.

 

[my little penguin]

Second set of questions
Has he work ups for things that mimic crohns ?
Very early onset crohns tends to not behave the same way or respond well to meds
Chop has a veo ibd clinic
They test for genetic /immunology /etc…
They also have an immune disregukation team (DIRT) which investigates things even further
Immunodeficiency/some auto inflammatory diseases etc can and do look like crohns but are in fact other things

my kiddo has an auto inflammatory disorder , crohns (or crohns like as far as they can tell ) and juvenile arthritis
They are still looking and re running genetics through a study at nih

when things don’t fit
Go see the folks who only deal with kids who don’t fit

https://www.chop.edu/centers-progra...W9fODSgKtlNbos6EoNw235kCSStBck-QaAtYhEALw_wcB

https://www.chop.edu/centers-programs/immune-dysregulation-program

 

[Maya142]

When you say maxed out, how long was he on Stelara? Was it only 6 months? Because it can take Stelara 6 months to fully kick in - or even longer. Was he put on 90 mg every 4 weeks?

Have you considered a second opinion at one of the big pediatric IBD programs? CHOP in Philly has an excellent program, and Cincinnati Children's and Boston Children's are also great.

 

[belindasteyn]

He was on Stelara for 1 year - monthly for the last 4 months. No pediatric IBD programs here - I am from South Africa and Crohn's are very rare here.

 

[belindasteyn]

Second set of questions
Has he work ups for things that mimic crohns ?
Very early onset crohns tends to not behave the same way or respond well to meds
Chop has a veo ibd clinic
They test for genetic /immunology /etc…
They also have an immune disregukation team (DIRT) which investigates things even further
Immunodeficiency/some auto inflammatory diseases etc can and do look like crohns but are in fact other things

my kiddo has an auto inflammatory disorder , crohns (or crohns like as far as they can tell ) and juvenile arthritis
They are still looking and re running genetics through a study at nih

when things don’t fit
Go see the folks who only deal with kids who don’t fit

https://www.chop.edu/centers-progra...W9fODSgKtlNbos6EoNw235kCSStBck-QaAtYhEALw_wcB

https://www.chop.edu/centers-programs/immune-dysregulation-program

Thank you for info

 

[my little penguin]

4 months at every 4 weeks is not very long for Stelara
Was this done with steriods /een and methotrexate?
You could ask for a Records review
Where you send the records but don’t go there in person
Chop does international cases so maybe ……
Chop (children’s hospital of Philadelphia)
Formulas for een
Boost /pediasure /ensure /neocate jr/modulen etc…
They can be polymeric ,semi elemental or elemental
All work about the same

 

[Pangolin]

My son's fecal calprotectin was over 13,000 at its highest. After surgery to remove a stricture at the terminal ileum, semi-elemental EEN, and Stelara it got down to <50 and 60 for the last two measurements. Even the 60 makes me a little nervous after a prior reading of "under 50".

It's certainly possible to get very high numbers and not have terrible symptoms, but it does mean something is wrong. Have you considered an MRI to check for inflamed areas?

 

[belindasteyn]

It was 8 months - once every 8 weeks; then 4 months once every 4 weeks - in total 1 year. Methotrexate and 1 month Entocort was added. Had no effect. It was the same with Humira.

My son's fecal calprotectin was over 13,000 at its highest. After surgery to remove a stricture at the terminal ileum, semi-elemental EEN, and Stelara it got down to <50 and 60 for the last two measurements. Even the 60 makes me a little nervous after a prior reading of "under 50".

It's certainly possible to get very high numbers and not have terrible symptoms, but it does mean something is wrong. Have you considered an MRI to check for inflamed areas?

Thank you. Wow thats high! The inflammation is in his colon.