Son's quick changes in symptoms on Stelara

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asadmom

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Seeking advice from people who are on Stelara please.

My son started Stelara in January:
01/25 loading dose
02/27 calpro < 50
(Normal bowel movement from around the 3rd week after the injection until this point)
03/20 bad diarrhea
03/22 -Stelara 8th week injection, crp normal, sed rate is bordering around the high range-
03/28 bad diarrhea
04/01 awful diarrhea
04/05 accident in the underwear + bad diarrhea

He also dropped 3 lbs from last week.

It is 04/05. I've enjoyed about 5 weeks of peace. It was wonderful. Nevertheless I am now back in the sad mode and seeking any insight from the veterans here. What is going on and what steps can I do to help him? Thank you.


cc @Pangolin @Scipio
 
I don't have direct experience with Stelara but know it takes a really long time to work. Our bed GI said could take up to a year. Was he on any other therapy when he got the <50? What was his calpro prior to starting Stelara? Is his disease primarily colonic? If so, maybe the Stelara isn't working for the colon but I am afraid you will need to give it the ole college try before abandoning it. Could be that he needs a shorter interval as many people do.

Does he have a bridge therapy for until Stelara "kicks in". Usually when changing meds, especially a slower acting one, physicians will back stop with a bridge therapy.

Our GI's rule is 3 days of continuous diarrhea and send the alert. Likely they will order stool studies for infection and calpro and possibly blood labs. This early in though likely they will want to stay the course. Especially since you already tried an anti tnf.
 
crohnsinct said:
I don't have direct experience with Stelara but know it takes a really long time to work. Our bed GI said could take up to a year. Was he on any other therapy when he got the <50? What was his calpro prior to starting Stelara? Is his disease primarily colonic? If so, maybe the Stelara isn't working for the colon but I am afraid you will need to give it the ole college try before abandoning it. Could be that he needs a shorter interval as many people do.

Does he have a bridge therapy for until Stelara "kicks in". Usually when changing meds, especially a slower acting one, physicians will back stop with a bridge therapy.

Our GI's rule is 3 days of continuous diarrhea and send the alert. Likely they will order stool studies for infection and calpro and possibly blood labs. This early in though likely they will want to stay the course. Especially since you already tried an anti tnf.
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No he was not on anything else. His diarrhea stopped and also gained 3 lbs during that time. We were positive that he's responding to Stelara since it's reflected in his lack of symptoms, weight gain and also normalized calpro. He had some superficial ulcers in the colon but mainly the problem was throughout the small bowel at the time of the diagnosis.

We had a doc appt on the same day as his first Stelara shot (8th week after the infusion) and since everything looked ok plus normalized calpro, the doctor didn't make any changes to the schedule or add any bridge therapy.

Since Stelara takes a while, how does that explain the calpro?
 
The calpro could have been his response to the anti tnf. Not likely the Stelara that soon after starting but anything is possible I guess. I would talk to the GI and take it from there. Remind me again, how old is he? If 16+, might be a good time to have him start emailing/messaging the GI to get used to handling his own care while he still has you around.
 
Wanted to add that while our kids have IBD they are also just kids and viruses go around so could be a virus. As a rule we don't get concerned until there is cause. Even a calpro without stool studies doesn't prove it isn't a virus as viruses will raise calpro.

FWIW - Norovirus is going around here, I know you live across the country but….
 
Second the need for bridge therapy.
His symptoms are increasing since Stelara isn’t holding him for 8 weeks
Ds requires Stelara every 4 weeks
Otherwise increase symptoms and bloodwork starts to creep up as does fecal cal
 
crohnsinct said:
The calpro could have been his response to the anti tnf. Not likely the Stelara that soon after starting but anything is possible I guess. I would talk to the GI and take it from there. Remind me again, how old is he? If 16+, might be a good time to have him start emailing/messaging the GI to get used to handling his own care while he still has you around.
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Actually he stopped Humira 5 months ago (normal calpro for 4 months) and what triggered the treatment was his 650 calpro on 1/18 (the 5th month since stopping) and symptoms. So his calpro was 650 then Stelara infusion and dropped to < 50 4 weeks after the infusion.

He just turned 14. I just sent mychart messages out.
 
my little penguin said:
Second the need for bridge therapy.
His symptoms are increasing since Stelara isn’t holding him for 8 weeks
Ds requires Stelara every 4 weeks
Otherwise increase symptoms and bloodwork starts to creep up as does fecal cal
Click to expand...

How does the bridge work, what medicine will be prescribed and how long do you need to be on it? Say if he needs to be on the 6-week schedule, then if we wait a few more weeks then the medicine should kick in?
 
Bridge therapy is steriods or exclusive enteral nutrition or both .
My kiddo was on steriods for over 4 months .
Took a long time to get insurance to approve Stelara for every 4 weeks .
Since he has only had one injection at 8 weeks
And he just started the med he may just need a bridge therapy until the med has more time to work
We were told 8 months to see it work
After 8 months of it not working enough
He was scoped -minor inflammation was found so insurance approved every 4 weeks
But they challenged that a year or two ago so we had to prove Ds still got worse with Stelara at 6 weeks
 
H did bridge therapy of 4-6 weeks EEN then 50% calories from shakes on CDED. It took over a year plus 4 week dosing for her to be stable. She's done well - we are 2 years in. She has primarily small bowel disease.
 
Pilgrim said:
H did bridge therapy of 4-6 weeks EEN then 50% calories from shakes on CDED. It took over a year plus 4 week dosing for her to be stable. She's done well - we are 2 years in. She has primarily small bowel disease.
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Which schedule should we use to assess the state of the disease? As in, if the injection schedule is every 8 weeks while on a bridge therapy (EEN/PEN/steroids) and if everything looks good, when can the bridge therapy stop? If not, how and when do we know to shorten it to 6?
 
This is so puzzling. The normal calpro, lack of symptoms and weight gain... in a few short weeks he gave it all back (tbd about calpro). :unsure:
 
asadmom said:
Which schedule should we use to assess the state of the disease? As in, if the injection schedule is every 8 weeks while on a bridge therapy (EEN/PEN/steroids) and if everything looks good, when can the bridge therapy stop? If not, how and when do we know to shorten it to 6?
Click to expand...
We used levels testing and calpro testing at 3 month intervals.
 
It really depends on your GI’s preference and your insurance requirements, but generally speaking they wait about 6 months before changing anything because Stelara is so slow acting.
As for dropping the bridge therapy they usually wait for 2-3 consecutive good calpro results and clinical remission before dropping bridge therapy.

I am surprised your GI let you drop therapy and have him completely unprotected.

Keep in mind you can’t be sure yet the return of symptoms is definitely IBD. Besides viruses, about 30%of IBD patients also have a functional disorder overlay IBS for example. 14 is a prime age for developing IBS.

You are just going to have to sit tight and methodically check the boxes. Test for infections, rule those out then calpro, start a bridge, wait, wait, wait. It’s what we do best.
 
Fecal cal was normal in feb
This is April
So it can go up with a flare
Add in induction is a high dose of Stelara based on weight 3-4 times a regular shot
Injections are only 90 mg .
As others said
You have to check with your Gi
I know you have 5 to 8 Gi ‘s but whoever is running his care as primary Gi
They will need to determine bridge therapy and for his long
Have they been notified of the symptoms ?
Any testing since symptoms got worse or only in Feb ?
Your one post states he lost 3 lbs
But later states weight gain ??
Did he gain weight at first but lose it later in April ??
Things that should be sent to the Gi
 
I thought your child had seen a few different Gi’s for different approaches opinions .
might be confused with another poster .
 
12.7 is plenty high for Stelara, so it's unlikely to be antibodies to Stelara or some other form of fast metabolism or clearance from his system. It also raises the question whether going to a 4-week dosing schedule would help at all. If 12.7 isn't doing it. I question whether boosting it even higher will help.

He might just be a primary non-responder, meaning that Stelara may not be the right biologic for him. Fortunately there are other options.
 
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Scipio said:
12.7 is plenty high for Stelara, so it's unlikely to be antibodies to Stelara or some other form of fast metabolism or clearance from his system. It also raisers the question whether going to a 4-week dosing schedule would help at all. If 12.7 isn't doing it. I question whether boosting it even higher will help.

He might just be a primary non-responder, meaning that Stelara may not be the right biologic for him. Fortunately there are other options.
Click to expand...

What is throwing me off is his diarrhea went away, he gained weight and the normal calpro all happened after the infusion. These positive indicators made us feel that he was indeed responding to Stelara.
 
Also, just like the kids blip high on some tests they also could blip low. One calpro isn’t enough to say for sure something is working.
 
It's too soon to say anything about that. But I think adding something like EEN or antibiotics here could be very helpful.

Edit: generally it sounds like the Stelara is helping, and it's going to take some more time to see if he's going to need more frequent dosing. The Stelara may need a little help at this point, though.
 
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EEN may work as a bridge therapy. I know @my little penguin mentioned this but I also wonder if he responded to the Stelara infusion and that dropped his FCP and controlled his symptoms. Because 90 mg is much lower than even the lowest Stelara infusion dose and generally IV drugs kick in much faster.

I think you do need a bridge until it kicks in. Kids are on steroids for months sometimes. EEN can also work very fast and even better than steroids with regard to mucosal healing, if you can convince him to do that. Sometimes the tube is a LOT easier than getting a kid to drink it. He could very easily place a tube at 14 once he's learned! It sounds so much worse than it is - my daughter started doing it in less than 10 seconds after the first week or two.

I am trying to figure out if he is the slow to respond guy or the I sorta responded but eventually ran out of med type of a guy.
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I would not panic because he MAY respond to Stelara. And he's not running out of meds - his disease was in remission on Humira right? You could go back to it - it's definitely possible. I know he had side effects but often rashes and even psoriasis can be controlled with topical meds so you can stay with the medication that is controlling his most serious disease.
 
Maya142 said:
EEN may work as a bridge therapy. I know @my little penguin mentioned this but I also wonder if he responded to the Stelara infusion and that dropped his FCP and controlled his symptoms. Because 90 mg is much lower than even the lowest Stelara infusion dose and generally IV drugs kick in much faster.

I think you do need a bridge until it kicks in. Kids are on steroids for months sometimes. EEN can also work very fast and even better than steroids with regard to mucosal healing, if you can convince him to do that. Sometimes the tube is a LOT easier than getting a kid to drink it. He could very easily place a tube at 14 once he's learned! It sounds so much worse than it is - my daughter started doing it in less than 10 seconds after the first week or two.



I would not panic because he MAY respond to Stelara. And he's not running out of meds - his disease was in remission on Humira right? You could go back to it - it's definitely possible. I know he had side effects but often rashes and even psoriasis can be controlled with topical meds so you can stay with the medication that is controlling his most serious disease.
Click to expand...

Right! I completely forgot that the IV dose is so much higher. Those weeks following the infusion were truly nice when everyone was sleeping through the night and things actually felt normal. I basically told the doc today that I am open to anything because life is not too fun at the moment and we will have to make major changes in our plans soon if his symptoms do not go away (and he is already conscious enough about the possibility of accidents). So ok with bridge or tightening up the injection schedule. Her response was hold, observe him today and tomorrow. I think the normalization of calpro is weighing her decision.

We have been avoiding EEN for a bit... and I am thinking about it again now. That requires the doc's approval, correct? A while back she had said that she could prescribe steroids if needed and since Nathan's symptoms were all gone (and calpro was < 50), we left without the script. I wonder if she will prefer steroids > EEN. I need to chat with her.

Right, he was in remission on Humira but never gained a lb. After the Stelara infusion, he gained 3 lbs over a week and a lb the week after. It was almost odd to observe that. Yes, we can go back to Humira. Psoriasis sucks but we can do the cream.
 
You would need a doctor or RD to write the orders for EEN if you want the formula and tube supplies to be covered under insurance. You could technically do EEN on your own but I wouldn't advise that. You really need to have an RD onboard so they can monitor calories and make the appropriate adjustments for intolerance of certain formulas, watch their electrolytes etc.

The "she" you are referring to, is that Dr. Dubinsky or your local doc? I am wondering if this is an office that just doesn't have a lot of experience with EEN. Did you guys talk about EEN in the appointment? A lot of pediatric GI's will discuss EEN with the patient and assess the patient's motivation level. If they feel like the kids are not 100% on board then they will suggest steroids because they want to know the inflammation is being treated but also don't want to torture the kids.

The hold observe is pretty standard. GI's know that more than just IBD causes diarrhea but I am surprised she didn't at least order stool studies.

I know it's not fun but it is still really early. You left a treatment that was working and he was untreated for awhile so inflammation crept back in. So, Stelara has an uphill battle and it will take time. If thisturnsout to be an IBD flare, hopefully the bridge therapy will get things under control and you can relax a bit until the Stelara kicks in.
 
I would definitely make sure to talk to your doctor before trying EEN and ideally to a dietician. Teens have to be 100% on board because otherwise EEN is not going to work - it's too easy for them to cheat at school, at friends' houses etc. My daughter had a very hard time doing it right when she was diagnosed.

Many doctors will now do 90% formula/10% food or sometimes even 80/20 and still consider it EEN. When we were at CHOP, that's what they did most of the time. There are certainly some kids who need 100% formula or who need semi-elemental or even elemental formula. My daughter's GI preferred semi-elemental for Crohn's patients and my daughter actually ended up needing elemental formula. Her tube was an incredible help because she had trouble drinking enough Peptamen Jr to even maintain her weight (much less gain weight) - it really sounds much more intimidating than it is.

At CHOP, they teach kids as young as 6 or 7 to insert their own NG tubes are night and remove them in the morning - pretty incredible. Do you think your son would consider EEN with an NG tube, if he won't drink it?

If he doesn't want to do EEN, then steroids are a good idea. Where is his disease located? You might be able to use Entocort if it's in the TI and cecum or Uceris if it's only in the colon. My daughter definitely prefers Entocort to Prednisone because of all the side effects with Pred - puffy, "moon face," weight gain, insomnia, mood swings etc.

The other thing I'd ask your doctor about is stool studies. I'm also kind of surprised your GI hasn't done them. Whenever my daughter flares and diarrhea increases, her GI always does stool studies. She's had C.Diff many times, starting the year she was diagnosed.

Unfortunately, I think you're going to have to just give Stelara time, particularly since his GI stopped his Humira for months before you started Stelara, so there's likely inflammation in his gut. I'm sorry he's feeling so awful :(. I hope his GI can figure out a plan for him.

Did you ever get to CHOP? I know you'd mentioned going there. They're really into EEN or partial or supplemental EN for weight gain and to make sure the child is getting enough nutrients.
 
Maya142 said:
I would definitely make sure to talk to your doctor before trying EEN and ideally to a dietician. Teens have to be 100% on board because otherwise EEN is not going to work - it's too easy for them to cheat at school, at friends' houses etc. My daughter had a very hard time doing it right when she was diagnosed.

Many doctors will now do 90% formula/10% food or sometimes even 80/20 and still consider it EEN. When we were at CHOP, that's what they did most of the time. There are certainly some kids who need 100% formula or who need semi-elemental or even elemental formula. My daughter's GI preferred semi-elemental for Crohn's patients and my daughter actually ended up needing elemental formula. Her tube was an incredible help because she had trouble drinking enough Peptamen Jr to even maintain her weight (much less gain weight) - it really sounds much more intimidating than it is.

At CHOP, they teach kids as young as 6 or 7 to insert their own NG tubes are night and remove them in the morning - pretty incredible. Do you think your son would consider EEN with an NG tube, if he won't drink it?

If he doesn't want to do EEN, then steroids are a good idea. Where is his disease located? You might be able to use Entocort if it's in the TI and cecum or Uceris if it's only in the colon. My daughter definitely prefers Entocort to Prednisone because of all the side effects with Pred - puffy, "moon face," weight gain, insomnia, mood swings etc.

The other thing I'd ask your doctor about is stool studies. I'm also kind of surprised your GI hasn't done them. Whenever my daughter flares and diarrhea increases, her GI always does stool studies. She's had C.Diff many times, starting the year she was diagnosed.

Unfortunately, I think you're going to have to just give Stelara time, particularly since his GI stopped his Humira for months before you started Stelara, so there's likely inflammation in his gut. I'm sorry he's feeling so awful :(. I hope his GI can figure out a plan for him.

Did you ever get to CHOP? I know you'd mentioned going there. They're really into EEN or partial or supplemental EN for weight gain and to make sure the child is getting enough nutrients.
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The tube will be hard. I think there is a much better chance of having him drinking the milk if the alternative is a tube. Is Modulen semi-elemental, btw?

His small bowel was all impacted (definitely not mild). I wrote the doctor about the stool tests but she didn't respond on that particular ask. How long do you need to be on Entocort for?

I actually did go thru the steps to get an appointment going with CHOP but cancelled it at the last minute over travel plan change. Is there any doctor that you can recommend? When I called to make an initial appt, I just randomly picked a doc on their website. I think my son can benefit from a more structured supplemental EN regimen.
 
asadmom said:
How long do you need to be on Entocort for?
Click to expand...

It's different for everyone. You need it for as long as you need it. O was on it for close to a year. T was on it for 12 weeks. The GI will monitor his progress closely and slowly try to taper once they feel the Stelara can take over. That's IF the GI wants to use Entocort. If the inflammation is bad enough they might ask him to try Prednisone or EEN as those are more successful at inducing remission.
 
asadmom said:
The tube will be hard. I think there is a much better chance of having him drinking the milk if the alternative is a tube. Is Modulen semi-elemental, btw?

His small bowel was all impacted (definitely not mild). I wrote the doctor about the stool tests but she didn't respond on that particular ask. How long do you need to be on Entocort for?

I actually did go thru the steps to get an appointment going with CHOP but cancelled it at the last minute over travel plan change. Is there any doctor that you can recommend? When I called to make an initial appt, I just randomly picked a doc on their website. I think my son can benefit from a more structured supplemental EN regimen.
Click to expand...

If his entire small bowel is involved, then you may not be able to use Entocort since that really only covers the TI in the small bowel. My daughter was on it 12 weeks the first time and over a year the second time.

But if there is inflammation in many places in his small bowel, then you would probably need either EEN or Prednisone.

I don’t know how helpful it would be to go to CHOP as a second opinion since you do need someone overseeing his EEN - both his GI and an RD should be managing it. If your local GI is against it, then I’m not sure who would manage it even if CHOP recommends it. Are you at Mount Sinai? Just because when we went to Mount Sinai they were not that big on EEN and tubes BUT that was nearly 8 years ago.

But if you do want a second opinion from CHOP, my daughter’s GI there has moved by she saw Dr. Grossman several times inpatient and really liked him.

I don’t know much about Modulen - I actually didn’t know you could get it in the US! Generally, for polymeric formulas people use Ensure, Boost or Pediasure. It also seems like Kate Farms is used more but my daughter never tried that. For semi-elemental, the ones our GI recommended were Peptamen Jr and Pediasure Peptide.
 
Maya142 said:
If his entire small bowel is involved, then you may not be able to use Entocort since that really only covers the TI in the small bowel. My daughter was on it 12 weeks the first time and over a year the second time.

But if there is inflammation in many places in his small bowel, then you would probably need either EEN or Prednisone.

I don’t know how helpful it would be to go to CHOP as a second opinion since you do need someone overseeing his EEN - both his GI and an RD should be managing it. If your local GI is against it, then I’m not sure who would manage it even if CHOP recommends it. Are you at Mount Sinai? Just because when we went to Mount Sinai they were not that big on EEN and tubes BUT that was nearly 8 years ago.

But if you do want a second opinion from CHOP, my daughter’s GI there has moved by she saw Dr. Grossman several times inpatient and really liked him.

I don’t know much about Modulen - I actually didn’t know you could get it in the US! Generally, for polymeric formulas people use Ensure, Boost or Pediasure. It also seems like Kate Farms is used more but my daughter never tried that. For semi-elemental, the ones our GI recommended were Peptamen Jr and Pediasure Peptide.
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I need to send in another calpro and that is gonna tell everyone quite a bit about the next step.

I have both Modulen and Neocate at home and I alternate them just to make things interesting.

Praying for a good bathroom experience today. 🙏🌸💐
 
Oh and there is no way his calpro could be normal now. I think it's just a matter of what will be prescribe and what to do about Stelara frequency.
 
Correct. If he is having diarrhea then the calpro is likely not to be normal (unless it is functional) but the key is to try to tease out what the diarrhea is from. Infection or disease activity. This is why the other stool studies are important. So the calpro is just the first piece in the puzzle.
 
Is he willing to drink Neocate? I’m impressed!!!
I would definitely ask again about infection tests because those could raise his FCP.

If he does have increased inflammation and it’s due to IBD and not an infection, then he may do very well with Stelara every 4 weeks. Some kids do - it just tends to be an insurance battle to get it.
 

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