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Calprotectin 926, Sed Rate increased

Hi -
My 10yr old son has been on Humira for 2 years now and has done really well. In the last month, his bowel movements have increased from 1-2 times daily to 3-5 times daily, and has been having stomach pain "that feels like Crohns". His dr is on maternity leave, but the dr taking over decided to repeat labs, get a Humira level, and calprotectin. His Sed Rate is 38, but even at his worst, it was only 30. His Calprotectin level scares me - 926. He also has had some blood in his stool. I'm still waiting on the Humira level, and for someone to get back to me.
Just curious what everyone's thoughts are - will they want repeat scopes?; is prednisone used in this case?; will they up the Humira dosing? I know a lot of this probably depends on the Humira level, but just wondering what other's experiences have been.
Thanks!
 

Maya142

Moderator
Staff member
Sorry to hear your kiddo is flaring :(! I would guess that if the Humira level is low, they will increase the dose from biweekly to weekly. If they're normal and he has antibodies, then they may consider switching him to something else.

Your doctor may also consider adding Methotrexate - it can increase trough levels of the drug and help prevent antibodies from forming.

In terms of Prednisone, the answer is maybe. It really depends on the patient. In his case, I think it would act as a bridge until Humira at the higher dose kicks in. But since he doesn't have terrible symptoms, then perhaps he can hang on until Humira kicks in and can avoid steroids.

But then on the other hand, considering he has a very high FCP and a high ESR and clear symptoms of Crohn's, another possibility would be to use a steroid, usually at a pretty high dose (usually 40 mg of Pred) induce remission. Then weekly Humira would maintain it.
 
His Dr is on maternity leave, so another dr called me back. She didn't have the Humira level yet, which will dictate how we proceed. She said she is going to review his file, but since it's been 2.5 years since scopes/MRE, we may need to repeat that. While I don't want to put him thru it, I think it may be a good idea. Or do you think it's reasonable to increase Humira (depending) and possible do some steroids to see if things improve before we repeat scopes/MRE? He also takes Azathioprine 75mg daily.
 

my little penguin

Moderator
Staff member
I would assume scopes MRE first
So they know where he is at now
Then probably increase humira or switch meds with pred as a bridge
Given he is on humira plus aza they might just switch meds
But definitely can’t add mtx

Ds had to stop humira almost two years ago
It’s stopped working (for his arthritis - crohns was ok)
Switched to Stelara which required steroids as a bridge for about 6 months

Good luck
Hope things calm down soon

Remember that een can be used as a bridge as well instead of steroids
Ds has done this a few times
 

Maya142

Moderator
Staff member
I would agree - scopes/MRE are a good idea if it's been 2 years or more. That will give a better idea of what is going on - where the disease is, how bad it is.

And yes, MTX + Aza would be too much for his liver probably, but you could swap Aza for MTX. MTX is now considered safer, particularly in boys.
 
Sorry to hear about the flare. My daughter has had several flares over the past four years and almost every time her Remicade levels were low (and once she had detectable Remicade antibodies as well). Each time, her doctor upped her Remicade dose and the flare ended. She didn't get a scope or MRE any of those times.

This past year, she flared again but turned out to have fairly high Remicade levels. Despite her high levels, her doctor upped her Remicade dose once again, and the flare ended. However, as it had been more than 3 years since her last MRE and scopes, she went ahead and ordered both just to make sure there wasn't any lingering inflammation. They were both clear, so we're still hanging in there with Remicade.

So that's a long way of saying that you may just need a Humira dose increase. Hang in there while you wait for levels, and I hope that your son responds quickly to whatever treatment change you try!
 
I know it isn't popular with us parents on the forum but my girls have had two GI's and in a situation such as this they would test levels and respond accordingly and wouldn't scope. Both docs would say, "no need to scope, I know there is inflammation and it won't change my plan of action". So I think it would be totally reasonable to ask the GI if scoping will change the plan of action. If so, then I would go ahead and scope. If not, I might be inclined to go ahead and make any changes and scope later to make sure they are working.

Your son's situation is why most GI's don't like to go longer than 2 years between scopes. Regular surveillance scopes will catch simmering inflammation that hasn't yet caused symptoms or raised labs to alarming levels. Although there is no guarantee that you would have caught this anyway so don't start kicking yourself.

As for what we have done in the past, we have bobbed and weaved with Remicade levels and a few times when levels seemed sufficient we have done a course of prednisone or budesonide to get her healed to the point where the Remicade could take over.

Good luck and keep us posted.
 

my little penguin

Moderator
Staff member
Honestly scoping/imaging is not just to “change “ the treatment plan
Scoping/imaging is required to know the extent of the inflammation
Has the disease spread , has the type of disease changed
Kids go from inflammation to stricturing fisstulas etc much more so than adults and it changes over 10 years - they know this
To document where he is at now inflammation wise so if you make changes like increase humira
Then you know whether those changes - made thing better , worse or kept the level of inflammation the same
Knowing there is inflammation is a no brainer
Knowing the extent of inflammation and type of disease /spread is impossible with just blood/stool
Lastly crohns kids are at high risk for colon cancer
The longer they have the disease
Inflammation causes cellular changes
Cellular changes can result in cancer
After 8 -10 years regardless of symptoms of crohns
It is recommended to have yearly scopes just to have surveillance for cancer

So yes scopes AND imaging are extremely important part of managing this disease
 
That is my main worry to see if there is stricturing/fistulas/cancer - and those things you can really only view on scopes, correct? He had life-threatening reaction to Remicade on 4th infusion despite all the pre-meds, and ended up with very high antibodies. If they determine the Humira isn't working, what else is there for his age? I know nothing that is approved. I'm seeing that possibly Cimzia or Entyvio may be options?
 

my little penguin

Moderator
Staff member
Stelera is also an option for crohns
Ds started that almost two years ago at age 13
Entyvio is more successful in UC per our kiddie Gi
And prefers Stelara for his crohns patients
 
His Humira level is normal at 12.6. He may just need a more frequent dose, as some of you suspected. But they want to reassess the disease activity and progression before we make any moves. I hate to put him thru it, but I think it's a good idea. I'll keep you guys posted. I appreciate the posts!
 

my little penguin

Moderator
Staff member
Just an FYI dosing for humira can be
40 mg every 2 weeks
40 mg every 10 days
40 mg every 7 days
And highest dose 40 mg every 5 days
Ds was on all of these at various times over 5 years
Good luck woth the scopes imaging
 

Maya142

Moderator
Staff member
In his case, I agree that scoping makes sense. Like MLP said, his disease could have spread. It could have become worse.

I don't mean to scare you, but I remember one story on the forum years ago - GI kept saying there was no need to scope. Kiddo had continued symptoms which were called IBS. GI finally agreed to sigmoidoscopy which was clean. Kiddo continued to have bad symptoms for months before Mom and Dad pushed for a full colonoscopy. After the scope, the GI came out to tell them their little girl's terminal ileum was one giant ulcer and had to be removed ASAP.

Now this was years ago, probably before Fecal Calprotectin was used frequently. So yes, now we do have a good way to monitor inflammation without scoping. But I still think scopes are very necessary in children to see if the disease has spread or progressed. And like you said - fistulas and strictures often can't be seen without imaging - an MRE usually. And those may change the treatment, so imaging is important.

Of course, if you've scoped a kid 6 months ago and if after increasing their dose, they were still flaring, then I'd understand switching to a new drug without scoping/imaging.

But if last scopes were years ago, I'd want scopes/MRE done first.
 
Update: MRE showed active inflammation of terminal ileum, cecum and appendix.
The scopes showed congested, erythematous, friable, ulcerated mucosa in the recto-sigmoid colon, cecum, ileocecal valve, and terminal ileum. Patchy moderately erythematous mucosa in gastric fundus and gastric body.
So basically, he's out of remission and things are quite similar, if not a little worse than the last scopes. It appears Humira isn't doing the job. They want to wait for the biopsies to see whether they will increase Humira to weekly, while adding on steroids, or changing meds altogether. They mentioned Stelara or Cimzia. They said the Entyvio is more colonic and for UC, like one of you mentioned. Oh - but no strictures or fistulas, so that's great news. So, we'll see. Keep you posted!
 

my little penguin

Moderator
Staff member
When Ds failed humira after 5 years the docs went with stelara over Cimzia
In Ds case they said his body had been flooded with anti tnf for 6 years
They thought a different agent would be better
Hope they get a good plan for your kiddo
Be prepared stelara is only approved for 18 and up

Less than 12 years old is harder to get approval
We had a long battle with insurance
At age 13
Stelara also took a very long time 8 months and Ds needed high dose every 4 weeks
 
Sorry to hear about the results, but at least you can move forward with changes now. How is your son feeling?
 

Maya142

Moderator
Staff member
Oh no! Poor kiddo. Definitely sounds like he needs a new med.

My daughter is currently on Cimzia. She has Crohn's in her colon, including her rectum and also in her terminal ileum. It's always been worst in her terminal ileum, but it is still mild Crohn's overall. Scopes usually show some ulcers and inflammation but nothing terrible.

She has done very well on Cimzia. No side effects except a mild injection site reaction, which went away after several doses. She gets 2 shots (each is 200 mg) every month - so a total of 400 mg evert 4 weeks.

It can also be given as 1 shot (200 mg) every 2 weeks, but once a month is more convenient for us.

The shot does not burn like the old Humira did but it does sting when injected. It's very, very thick and we've found that injecting very slowly minimizes the pain. M has been on it roughly 2 years (with a break in between for 6 months, because of insurance issues) and it has worked very well for her. Her last Fecal Calprotectin was 19 - an all time low for her!

M had been on 4 anti-TNFs when she started Cimzia. (Humira, Enbrel, Remicade, Simponi). Anti-TNFs do not work for her arthritis, which is severe, but do work for her Crohn's, so her GI felt it was worth a try. So far, we've been very happy with Cimzia.
 
The dr called, and said that the biopsies were pretty consistent with their scope findings. Sounds like his terminal ileum, and cecum are the worst with ulcers/inflammation. His rectum/sigmoid colon isn't great either. They want to up the Humira to once weekly and see how that goes. They said it works rather quickly. They said they are trying to get away from using steroids, as they mask the symptoms, while the inflammation is still present. They did say that if the pain/diarrhea/bleeding continue, we can try Entocort since it works topically in the intestines. We are going to run labe the week of June 10th and see them on June 20th to discuss if this seems to be working. His trend in Humira levels has gone down each time, even though it's considered a theraputic level, so they think he may be a kid that just needs more. Fingers crossed. If not, then we'll be discussing Stelara or Cimzia. I can't say enough how I appreciate all of your responses.
 
It's great that there is a plan of action in place. Let's hope this gets your son to a better place. :thumleft:

 
I just posted on someone else's thread that a lot of kids need much higher levels of the drug to get to remission. Remicade says a level of 4-7 is sufficient yet O needed to be at a level of 12.

Sounds like a good plan. I hope it works!
 

Maya142

Moderator
Staff member
Glad there's a plan! I hope the switch to weekly Humira makes a difference. Is he still on the Azathioprine?

They can also test Azathioprine levels - they test for a metabolite, 6 TGN which should be between therapeutic levels. My daughter had very low levels so to "optimize" treatment, we tried increasing the dose. It did help her Crohn's to get her to therapeutic levels but then she got too many infections so we discontinued Imuran.

Switching to MTX is another option - I'm actually kind of surprised they are using Imuran because at our children's hospital, they don't like giving it to kids unless they have failed MTX, particularly for adolescent boys. Your son isn't quite there yet but wanted to mention it.
 
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