Fecal Calprotectin High during sinus infection

[BoyMama2000]

Hi Everyone,

My son has been on Stelara for a year and felt great. Scope 6 months ago shows some mild inflammation in terminal ileum and cecum and FCP was low 200's last 2 measures. Just got another one back today and it is 1150! I emailed his doctors but wanted to know if anyone knows if it can be elevated because he had an active sinus infection when the stool was collected. Could the gunk he swallows from his sinuses elevate FCP or did the Stelara stop working. When this was high before (1 year ago) he had c-diff and D. Now he has what he says are normal stools. He goes back to college tomorrow (ugh) but is only 45 minutes away thankfully.

Also wondered about entyvio or meds aside from Humira and Remicade...would prefer not to use them.

Thanks,
Mom 0f 19 year old with Crohns

 

[my little penguin]

Did he take abx with the sinus infection?
Maybe starting c diff again ?
At least our GI will not use entivyio on Crohns kids
They are not seeing it to be effective enough for Crohns
They use remicade humira and Stelara
But not Entivyio


They only are seeing good results with entivyio and ulcerative colitis

Can you bump Stelara up to every 4 weeks ?
Add mtx to it ?
Check Stelara levels ?

Ds started Stelara in August of this year but will have scopes to check in Feb after 6 months
His Sed rate has been raising so concerned as well

They did increase his to every 4 week injections
He no longer has remicade or humira as an option
Allergic reaction to remicade and humira stopped working after 5 plus Years

So while you may not want those drugs due to precieved risk
Please be thankful you still have them as an option


Really hope you can play with the Stelara to get it to work

 

[Guerrero]

Hi Everyone,

My son has been on Stelara for a year and felt great. Scope 6 months ago shows some mild inflammation in terminal ileum and cecum and FCP was low 200's last 2 measures. Just got another one back today and it is 1150! I emailed his doctors but wanted to know if anyone knows if it can be elevated because he had an active sinus infection when the stool was collected. Could the gunk he swallows from his sinuses elevate FCP or did the Stelara stop working. When this was high before (1 year ago) he had c-diff and D. Now he has what he says are normal stools. He goes back to college tomorrow (ugh) but is only 45 minutes away thankfully.

Also wondered about entyvio or meds aside from Humira and Remicade...would prefer not to use them.

Thanks,
Mom 0f 19 year old with Crohns

Hi boymama, dont worry too much, fcp levels can be very volatile. Maybe your doctor will suggest to retest it in one month to see if high levels are confirmed, or increase stelara.

Remicade, Humira and Entyvio are very good medications too, many members use them, major side effects are comparable for all biologics but rare.

Entyvio work in the gut only so in my opinion there is less risk in terms of infections, but please discuss it with doctors.

 

[BoyMama2000]

Did he take abx with the sinus infection?
Maybe starting c diff again ?
At least our GI will not use entivyio on Crohns kids
They are not seeing it to be effective enough for Crohns
They use remicade humira and Stelara
But not Entivyio


They only are seeing good results with entivyio and ulcerative colitis

Can you bump Stelara up to every 4 weeks ?
Add mtx to it ?
Check Stelara levels ?

Ds started Stelara in August of this year but will have scopes to check in Feb after 6 months
His Sed rate has been raising so concerned as well

They did increase his to every 4 week injections
He no longer has remicade or humira as an option
Allergic reaction to remicade and humira stopped working after 5 plus Years

So while you may not want those drugs due to precieved risk
Please be thankful you still have them as an option


Really hope you can play with the Stelara to get it to work

Thanks- could be cdiff perhaps. I am hoping they do a PCR panel for infectious causes and see his Stelara levels and if he has antibodies. He is in college and doesn’t want to take methotrexate for social reasons. Wish he would and was on it for a few years in high school. I didn’t know they could dose up Stelara so will ask that too. Thanks for your help. May need to move to Humira and will ask his doc about entyvio. He is the head of the IBD Clinic at our teaching hospital.

My sons 6 month scopes were drastically
Improved and hope the same is true for your son. Why can’t he take Demi or Humira?

 

[BoyMama2000]

I didn’t know FCP can be that volatile so good to know and hoping we can retest and get his Stelara values and rule out a GI infection. The. We will see if he stays on Stelara or needs to move on. Hope it will work since he has had no side effects and it is so easy.

Thanks again

 

[my little penguin]

He took remicade for 8 months when he was first dx 7 years ago
He had two allergic reactions back to back woth iv steriods
He was then switched to humira at age 9 stayed on it for over 5 years
We had to stop it for surgery earlier this year (non Crohns related)
But when it was restarted it did not work
His arthritis flared badly -we were using een to control his Crohns plus mtx
We added low dose steriods and waited for Stelara to kick in

He just got his first every 4 week shot of Stelara last week

We also tried ivig which can be used for refractory Crohns
Not an immunosuppressant at all
Has high rate of horrid side effects so we stopped


Tagging Maya142
Her adult kids did mtx and were still slightly “social”
She might have pointers
Also good question to ask his GI
How social is too social
Mine is only 14 so not an issue yet
He was dx at age 7

 

[Maya142]

My older daughter was on MTX through college. Of course, the big worry is drinking with MTX. Different doctors have different rules about drinking. Her rheumatologist said a couple of drinks a week would not impact her liver. In the beginning of college, she probably drank more than that, but as she got older the novelty wore off.

Her liver numbers were monitored closely and were always fine.

She took MTX on a weekend night so she had the next day to rest. She had no major side effects at all from MTX - just some fatigue and occasionally nausea. She had Zofran if necessary but rarely needed it.

MTX worked very well for her. She is still on it and does drink, but only occasionally.

As for the FC, I would check for CDiff. Though if he has normal stools (no diarrhea) then it is unlikely to be CDiff.

I would also ask to re-test in a few weeks and then see what the number is. You could still up the frequency of Stelara, like my little penguin said.

Plus, if he does need a med change, Humira and Remicade are NOT bad choices. Both my girls were on them - no side effects at all. Humira worked really well for both my girls - my older daughter just switched from it after 5 years on it.

Our GI also does not like to use Entyvio for Crohn's - she says it doesn't work well for Crohn's, but does work well for UC. My younger daughter had a bad reaction to Entyvio - she got drug induced Lupus from it. However, that is very rare.

 

[Guerrero]

I think it's wrong to say entyvio doesn't work well for Crohn's... patients are differents and for some entyvio works great while anti tnf failed on them.

 

[my little penguin]

Guerrero

We were just told by our child pediatric GI (one of the top few places in the country )
That they have not seen good results in Pediatric ibd with entivyio for their Crohns has kids
And no longer place their Crohns kids on it
They use Stelara instead since it has a better success rate for kids

That’s kids not adults
Which is why I stated kiddie GI
There are a few parents who tried entivyio on here
No success stories
A few tried Stelara mostly successful not all
Neither was a large group
Adult phenotype for Crohns is different than kids
Even young kids like my Ds is different than older kids at dx
And toddlers are a third phenotype just in kiddie GI alone

Once you get to entivyio or Stelera for kids
Things are bad and they have failed a lot of meds
So not the same as adults

 

[my little penguin]

Also I didn’t say it didn’t work for adults with crohns
I said my child GI group does not use entivyio for their pediatric Crohns patients

 

[my little penguin]

Fwiw the ped GI groups won’t use 6-mp/aza either for kids anymore unless absolutely necessary
They used to prescribe it
But don’t now Due to the increased lymphomarisk in kids
6-mp/aza is used a lot in adults and still works

Even two years ago the same GI group was excited over entivyio
But not now

 

[Maya142]

I think it's wrong to say entyvio doesn't work well for Crohn's... patients are differents and for some entyvio works great while anti tnf failed on them.

You're right that everyone is different. That is just our GI's experience - in her experience, it does not work well for kids with Crohn's. Remember that kids are different from adults and tend to have more severe disease.

Also, since it is not FDA approved for kids, it's being used only on the kids who have run out of options - the ones with severe Crohn's. For those kids, in her experience, it doesn't seem to work well.

This GI is at one of the top pediatric IBD departments in the US.

For what it's worth, we talked to the head of the pediatric IBD program at our hospital and he said that he thinks Entyvio would work well for mild Crohn's, but not severe. It hasn't really been used much for mild Crohn's at our hospital since it is only used as a last resort for kids.

But once it is approved for kids, it will be used more and then there will be more information.

For what it's worth, my daughter seemed to do well on Entyvio. She does not have severe Crohn's, it's relatively mild. She only had 2 infusions but she seemed to be improving. Unfortunately, she developed drug induced Lupus from it (which is very rare) so we had to stop it.

 

[BoyMama2000]

My son is 19 and was diagnosed at 13....likely started around age 11 when he stopped growing. I wonder where that puts him with Entyvio. I guess we will wait and see what the doctor says. He emailed me and asked how he was feeling and mentioned his B12 was high. It is high but was higher last year and when I asked him about it he wasn't concerned so not sure what that could mean. Nurse also called me back and was glad I collected stool before he moved back into his dorm today. She thinks they will do a panel to rule out infectious conditions but hope to learn tomorrow.

Just like mental health drugs, Crohn's drugs seem to be very person and sub-group specific.

 

[BoyMama2000]

Update: Doctor said we do not need to test for Cdiff because his stools are formed but I have read sometimes that some people do not have loose stools with it.

He said we should do a scope to see what is going on and do Stelara level and antibodies within 5 days of his next dose which is not until mid February.

I asked to repeat FCP just to make sure it wasn't a lab error and asked when he wanted to do the scope.

Ugh - my mom instinct thinks it can be c-diff and that it can progress and get worse like last year. What do do!

 

[Guerrero]

Also I didn’t say it didn’t work for adults with crohns
I said my child GI group does not use entivyio for their pediatric Crohns patients

Alright, I see your point. I was just trying to bring help and support to boymama as she specifically asked about entyvio for her 19 years old son. I have no idea if 19 year's old is still an adult age in her country nor if her son tried an anti tnf before, but as entyvio works diferently in my opinion it could worth a try... of course doctors opinions are probably better than mine, however hope is important too, and entyvio is working great in some adult case so why not...

Maybe there will be no need to change medication as increasing stelara will make things better, but it's good to know there could be another option in case it doesnt work.

 

[Maya142]

Update: Doctor said we do not need to test for Cdiff because his stools are formed but I have read sometimes that some people do not have loose stools with it.

Some labs will actually not test for CDiff if the sample is formed, solid stools.

For what it's worth, my daughter has had CDiff twice and both times she had very watery diarrhea, many times a day. Like 20 times a day. And in her case, it was caused by being on antibiotics for an infection both times.

Hang in there - it may be that all he needs is a higher dose of Stelara. And if not, you do have good options left.

 

[my little penguin]

Our GI has ordered cdiff Tests in formed stool and the lab slips always State they will not test solid stool :duh:

Good luck with the scopes
Any imaging ?

 

[BoyMama2000]

The lab did do the PCR panel and FCP. The PCR all came back negative. No C-diff or any other infection! His repeat FCP (only 1 week after initial) was 950 so 200 less but still very high. Plan to do scope Feb 1 and bloodwork for Stelara level and antibodies Feb 16 just before his next shot is due. I guess we will then formulate a plan. It is pretty wild that his FCP can change by 200 in 1 week. I wonder how consistent it is within each b.m. Either way, it is high and glad we will see what is going on inside. He was thrilled to learn that just as he went back to college. We did accommodate him to do a Thursday when he only has one class. It won't be his doctor but I think that is okay. He only does Wednesday procedures and he has his biggest load on that day of course!

He continues to feel well so will need to hope that continues and wait and see.

Thanks again everyone. I find all of your experience and insight so helpful.

 

[my little penguin]

Good luck with the scopes

 

[BoyMama2000]

Hi Everyone, We have an update. It does seem his FCP's are a great indicator of his disease state. At 900, it was much worse than his scope at 222 and a bit better than his scope at 1400 FCP. The Stelara levels came back from Mayo and he did not have antibodies but they were low. We got approval to inject every 4 weeks now at 90mg. We will see if it works in about late June when they will do another FCP. If it is, we will continue, if not, we will need to go to plan B. Hopefully he won't get an abscess or anything in the meantime. He had moderate inflammation in rectum, transverse colon and some in the ascending. Sigmoid and terminal ileum area looked good. Thanks for your guidance everyone.

One more question - has anyone seen good results when increasing their med frequency, Stelara or any other biologic? Hoping this works!

 

[Maya142]

Yes, we always have to increase M's dose/frequency - pretty much any biologic we have tried. One doctor told us that 1) kids/young adults metabolize meds more quickly than older adults and 2) that when you have a lot inflammation, you need a lot of the medication. You may be able to back down on the dose/frequency when he's better or you may not. Depends on the kid.

I will tag my little penguin - her son just went to 90 mg every 4 weeks and I believe he's feeling better!

 

[BoyMama2000]

Thanks! That is great to hear. I did think that he is a very active and muscular almost 20 year old so perhaps he is metabolizing more but didn't also think about the inflammation piece. That makes a lot of sense. I hope to hear from penguin...and hope her son is feeling better. We are lucky in that my son has no symptoms in this flare but also don't know what is going on without scopes or FCPs. We will take it but it makes it hard to know if he is flaring until he gets an abscess!