Slight Flair-Remicade

[Nolan11]

Hello, my 15 year old daughter has been on Remicade for about 18 months every 8 weeks and all blood work and past stool calprotectin has been normal. Her last stool calprotectin a few days ago showed no blood but hard stool and she hadn't pooed in 7 days so I think there was constipation. The FC came back at 267 which is moderately high. She has no blood or any other symptoms. Our GI has been great and is getting her Remicade levels checked the day before her next infusion which is in about 2 weeks.

My question is as I know some of you have experienced this before. Are we possibly looking at a dose increase and/or frequency. If her Remicade levels come back therapeutic, is it possible Remicade still cant work? My worst fear is it completely stopped working and will have to switch to a different Biologic. I know this is all speculation as we wait to see what the GI says with latest Remicade level check. Is it possible since she is growing, maybe her metabolism needs more Remicade or more often or both?

@crohnsinct

 

[my little penguin]

You have a lot of room to move up for remicade
Every 6 weeks or every 4 weeks
As well as dose increase
267 isn’t really that high at all - barely above normal
Flare is considered once it’s at 1000 or higher
Bloodwork normal ?
No other symptoms than constipation ?
Are you treating constipation daily ?
Was she having constipation prior to dx ??

They can also add mtx ?
One blip of fecal cal isn’t anything to worry about
Just one data point
You need more to have a trend

 

[Nolan11]

You have a lot of room to move up for remicade
Every 6 weeks or every 4 weeks
As well as dose increase
267 isn’t really that high at all - barely above normal
Flare is considered once it’s at 1000 or higher
Bloodwork normal ?
No other symptoms than constipation ?
Are you treating constipation daily ?
Was she having constipation prior to dx ??

They can also add mtx ?
One blip of fecal cal isn’t anything to worry about
Just one data point
You need more to have a trend

Yes last bloodwork from 8 weeks ago was all normal.
No clinical symtoms at all other than slight constipation but thats the 1st she seemed to have that. We teased her because it only seemed to happen when she knew she had to poo in a hat. Other than that she would always go poo once a day or every other day. She does not have any prior constipation. Can blood from constipation raise FC level?

 

[my little penguin]

Constipation does NOT cause fecal cal to go up.
Ds has had constipation since dx
And has had below 15 fecal cal for years
(As long as he takes his Stelara/mtx on time )

You can be constipated and still have one bm a day
It goes by Bristol stool number
She needs to track
They want a 4-5 Bristol number daily
https://www.webmd.com/digestive-disorders/poop-chart-bristol-stool-scale

 

[crohnsinct]

I know it is hard but try not to get ahead of yourself with worry. Take things a step at a time. Your GI sounds very level headed and proactive.

Where is your daughter’s disease located? True that 267 isn’t that high but it is more concerning if she has small bowel disease than if she has colonic disease. Small bowel disease doesn’t tend to return the dramatic calpro results that colonic disease does. Even still though 267 is a yellow alert point.

Getting a levels test is an excellent idea but even if it is in therapeutic range it may still be worth increasing dose or shortening interval as some people need higher levels in order to respond. So I wouldn’t abandon Remicade based on the levels test without first trying the increase for a few cycles.

Another good way to check to see if Remicade is still working is to take a calpro halfway through the cycle or even 2 weeks after infusion. If it comes down then you know she is still responding and dose adjustment is all that is needed.

Also, even if the dose is therapeutic she might be developing antibodies. This should be reported along with levels. If the antibodies are too high, adding methotrexate could help bring them down and get the Remicade working better again.

It might also be possible that she caught a bug or something that might have increased her calpro this one time.

Another theory (weaker though) is if she really didn’t go for 7 days, the neutrophils were not being carried out and were allowed to build up thereby increasing the calpro. This is one of the theories as to why first BM of the day should be used for calpro because it will return a higher number than if you are going 6 times a day and use the sixth as most of the neutrophils would have been shed throughout the day. There have been studies on this and nothing has been proven one way or the other but most GI’s prefer first of day.

Good luck and keep us posted.

 

[Nolan11]

I know it is hard but try not to get ahead of yourself with worry. Take things a step at a time. Your GI sounds very level headed and proactive.

Where is your daughter’s disease located? True that 267 isn’t that high but it is more concerning if she has small bowel disease than if she has colonic disease. Small bowel disease doesn’t tend to return the dramatic calpro results that colonic disease does. Even still though 267 is a yellow alert point.

Getting a levels test is an excellent idea but even if it is in therapeutic range it may still be worth increasing dose or shortening interval as some people need higher levels in order to respond. So I wouldn’t abandon Remicade based on the levels test without first trying the increase for a few cycles.

Another good way to check to see if Remicade is still working is to take a calpro halfway through the cycle or even 2 weeks after infusion. If it comes down then you know she is still responding and dose adjustment is all that is needed.

Also, even if the dose is therapeutic she might be developing antibodies. This should be reported along with levels. If the antibodies are too high, adding methotrexate could help bring them down and get the Remicade working better again.

It might also be possible that she caught a bug or something that might have increased her calpro this one time.

Another theory (weaker though) is if she really didn’t go for 7 days, the neutrophils were not being carried out and were allowed to build up thereby increasing the calpro. This is one of the theories as to why first BM of the day should be used for calpro because it will return a higher number than if you are going 6 times a day and use the sixth as most of the neutrophils would have been shed throughout the day. There have been studies on this and nothing has been proven one way or the other but most GI’s prefer first of day.

Good luck and keep us posted.

Thank you so much once again for your support everyone. She does have UC and is located in the lower large colon. Does adding MTX add any risks of infection or long term complications?

 

[crohnsinct]

Oh ok then wow! 267 isn’t bad at all.

Every drug adds some level of risk but methotrexate is widely used with little complication. It could affect the liver so if you use it they would watch those numbers carefully. It is an immunomodulator so does lower immunity but honestly I have been here for 10 years and seen very few kids get increased infections because of it. My girls were on it for years and no problems at all.

The big thing with mtx is it is bad for pregnancy and can cause birth defects. For this reason they might require her to start birth control our pediatric GI didn’t but I have heard of some who do.

mtx is a folate antagonist so she would supplement with folic acid.

But don’t get ahead of yourself. You might be just fine with a little dose adjustment.