• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Calling Stelara Parents

H has had another huge fcal leap to 4200. Levels of Humira still high and there's no more waiting. We have a telehealth in a few weeks to decide what to do next. She has been taking 40mg weekly plus 15mg Methotrexate injections.

I think Stelara is on the table. He has mentioned 80mg Humira/weekly in the past but I don't know if it makes sense considering how high her Humira levels are already.

She has been taking Humira for 6 years, since age 4. We never used Remicade.

She's 10 now. Her last scopes were a year ago and showed active disease and shortening of villi in the upper duodenum. Her TI had healed, and colon showed mild chronic disease but not active.

Does anyone have advice regarding Stelara? I am leaning toward it given her disease is active in the small bowel and an injection schedule change would be great. She has 8 injections a month plus labs and it's wearing on her psychologically.

C is also flaring. He's 12 now. Moving to 40mg Humira weekly.

Seems like this is Christmas each year!💩
 

my little penguin

Moderator
Staff member
Ds was on remicade 8 months then humira over 5 years -did not make it to 6 years
He was on humira every 5 days before switching
We were told at that point they would try Stelara since his body had “SEEN” anti tnf alpha inhibitors for too long
And later if we needed we could try another anti tnf
Stelara took every bit of 8 months to work for ds
And he has mild crohns
Lower frequency 90 mg every 8 weeks did not work

he started stelara (induction infusion) in aug 2017 age 13
Then 90 mg every 8 weeks after that
Weaned from steriods Dec 2017
Still had high sed rate (his is always normal )
Scope beginnings of feb 2018 mild inflammation TI still
Upped to 90 mg every 4 weeks in March 2018
Felt better by April 2018
He continued mtx while on Stelara due to arthritis as well



his sed rate dropped to normal after the Stelara was increased to every 4 weeks
He has been on it ever since -age 17
Last Fecal cal was below 15
Sed rate was 2 (0-20 normal )
Only one minor rectal inflammation blip last year
Used Uceris foam fir 8 weeks and it was gone

Good luck
 
MLP that is encouraging! No arthritis dx here so I wonder if she could drop MTX.

Did your son take Pred or Budesonide? Do you remember the dose he had while waiting for Stelara to kick in? Steroids are tough.

Also does Stelara contain citric acid or os it an easy shot? How long was the initial infusion?
 

my little penguin

Moderator
Staff member
Infusion was a couple hours but he had iv solumedrol because his joints were so bad .

he was on 10 mg of pred but that had been for months (surgery meant humira was stopped in March 2017)
Tiny steriod dose of 10 mg pred was started 6 weeks after surgery. He was arthritis mess by then .
Humira was then restarted -given a few weeks to work
Did nothing
So stelara was started

per Ds Stelara does not burn for the injection like humira
It hurts a little if say “mom” is in a rush and doesn’t let it warm up for 15 minutes
Stelara is only stable at room temp once for four hours.
Then it is no longer effective

the syringe is weird (hard plastic -think kids breakable toys- over a tiny built on glass vial )
The hard plastic syringe covers the needle (spring ) after injection

10 mg of pred did not cover his symptoms at all btw
But he had developed adrenal insufficiency duringbthis due to using pred from may/June until Dec
So they wanted it as low as possible
10 mg was almost useless
Also remember though his arthritis is far worse than his crohns so Stelara every 8 weeks wasnt the best for arthritis
 
So sorry to hear that both kids are flaring. And yeah, it seems like there's something about Nov/Dec that seems to lead to flares here too. Are your kids having symptoms, or just high calprotectin?
 
So sorry to hear that both kids are flaring. And yeah, it seems like there's something about Nov/Dec that seems to lead to flares here too. Are your kids having symptoms, or just high calprotectin?
C had been having pain since September but we didn't even mention it at consult in October because he had so many past issues with pain that ended up being severe constipation with labs all good. The fcal was just an afterthought by GI as he was ordering one anyway for H. Turns out that this time the disease was flaring. I felt bad after the fact that I missed it but it's a good lesson for anyone reading.
His calpro was almost 600 and he's never been above 200 if I remember correctly. He's 12 and was diagnosed at age 9 with mild disease on scopes.

H has just been really tired for months. Recently a little pain after eating. She is usually pretty asymptomatic even when flaring but also very good at protecting herself. Rests a lot. It's hard to tell what is going on. There are eventually things that show up in bloodwork. Dropping albumin, RBC drops, etc.

Usually the Calprotectin is the red flag.
 

Maya142

Moderator
Staff member
Really sorry to hear H is flaring. That is the highest FCP I have seen in 7 years on here - yikes :eek:. I can't believe she doesn't have major symptoms!!

Has Humira ever controlled her disease well? I'm asking because she could be a primary non-responder (i.e. does not respond at all to anti-TNFs) or a secondary non-responder (used to respond to an anti-TNF but lost response). The next med choice should depend on which category she is in. If she's a primary non-responder, then they'd use either Stelara or Entyvio. Entyvio works best in the colon, as I'm sure you know, and i know H has had pretty severe colonic disease in the past. The downside would be that her small bowel may not respond.

My daughter's GIs (both adult and pediatric) told us that Stelara works better in the small bowel...but then you run into the chance that her colon will flare again.

Repeat scopes might make sense given that Stelara/Entyvio work in different places - you need to know where the inflammation is.

If she's a secondary non-responder, that makes life simpler. Then you'd go to Remicade. The BIG advantages of Remicade are the ability to play with the dose and frequency relatively easily and that it works relatively fast compared to Stelara/Entyvio (6 weeks or so vs. 6 months or more). My daughter has been on as low as 3 mg/kg every 6 weeks (that did nothing) to 20 mg/kg every 4 weeks. Since it's dosed by mg/kg, it's good for growing kids. Plus it means less pokes - just an IV and they draw blood work right there.

My daughters have not been on Stelara but both have friends on Stelara. According to them, it's not horribly painful like the Humira with citrate.

Has H ever tried doing her own shots? Sometimes that helps - to give them some control. I know she is only 10, but we have seen kids with JIA as young as 5 doing their own MTX shots...
 
@Pilgrim I have been on Stelara for almost a year and a half and it has done wonders for me! I still ended up needing surgery because of stricturing from previous flares (I have had a few mild/moderate ones and one severe one before diagnosis and then two moderate ones due to failure of response to Entyvio and inadequate dosage of Stelara). I can tell you that it is the only med I have responded to for this long and has brought my fecal cal into normal range. The shot itself is not painful at all like citrate Humira is. I am not sure if they have a pen version for Stelara which would make injection even easier but I have had no problems learning how to inject with the regular syringe and it is my first injection med (previously on azathioprine, Remicade, cyclosporine and Entyvio). I would definitely try it if a med change is needed. Very minimal side effects.
 
@JessicaGrace24 Thank you! That is great information to know and your flare history is similar to my daughters - no surgery here yet. She is 10. She has never had an fcal in normal range. How long did it take for Stelara to work for you?

@Maya142 I am really glad you saw my thread and chimed in. I hadn't thought he would consider Remi as an option but your explanation makes sense. It also makes sense to use up the tnf options before we move on. You might remember that we are 4 hours from children's hospital each way on winter roads (Canada) and that is the thing that gives me pause. Not to mention driving into a Covid-19 zone when our town has no cases. There are a lot of extra things to consider.

She's not into doing her own shots. Mtx isn't a needle phobia, but more a dread of how she will feel for 24-48 hours afterwards. She is on a 15mg dose. Citrate Humira just hurts a lot.

She is probably considered a secondary non responder although she's never had normal fcal.
 

my little penguin

Moderator
Staff member
@Pilgrim
We were told after Ds had been on humira for 5 years his body was too used to pushing back against anti tnf so they felt it was better to have a drug that pushed on another pathway and sometime later he could use anti tnf if needed .
Granted remicade was off the table since he already reacted too it first so ... that may have been why .

Other thing to consider is puberty
Chemical changes (immune system is affected ) before physical changes and regardless of drug .
Puberty is a bear on auto immune kiddos -causes flare after flare .
 
@Pilgrim It took the expected 6-8 months to fully kick in (I ended up in the hospital at around the 6 month mark and then my dose was adjusted to every 4 weeks with a re-loading IV dose and this is when we really saw improvement in my fecal cal numbers). I was on steroids for about 6 weeks alongside the loading dose to provide bridge therapy until it kicked in and I'm sure your doctor will do the same whether it be Remicade or Stelara that you move to next. I should say that I was a secondary non-responder to anti-TNFs (numbers started slowly going the wrong direction once taken off dual therapy- azathioprine) and I developed a severe psoriasis reaction to Remicade that we struggled to get under control which is why they didn't bother trying Humira with me even though I didn't have antibodies. Entyvio was a mistake given that I have history of extensive small bowel disease and moderate/severe psoriasis which is why I switched GIs to one that specializes in IBD, granted my case was confusing given the severe flare that led to my diagnosis showed some mild/moderate inflammation in rectum and first part of colon and sigmoid as well as severe extensive small bowel disease. I now believe the large bowel inflammation found was due to infection from the abscesses in my TI, fistulas connecting small bowel to sigmoid, and straining from blockages in my TI and proximal ileum and since that flare I have never showed any signs of large bowel disease or rectal problems. Rather subsequent flares showed up throughout my ileum and jejunum.
 
Last edited:
@JessicaGrace24 wow! H had a lot of colonic involvement at diagnosis as well because it took so long to realize she needed scopes. Ever since (7 years now) it has been primarily TI activity and duodenal disease most recently. Also her stomach at one point.
 
@my little penguin Her Humira trough levels are higher than his office has ever seen - in any kid. So he may come to the same conclusion as ds GI. Might be no point to try remicade.

I'll add an update on Tuesday after consult.
 

my little penguin

Moderator
Staff member
Good with the consult
Ds didn’t see real improvement until he was Stelara every 4 weeks at 90 mg as well (around 9 months he was increased after insurance approval and scopes showed inflammation still present )
Forgot to mention that ;)
 
@JessicaGrace24 wow! H had a lot of colonic involvement at diagnosis as well because it took so long to realize she needed scopes. Ever since (7 years now) it has been primarily TI activity and duodenal disease most recently. Also her stomach at one point.
Yes, my TI and proximal ileum are where my disease has always been the worst and where my strictures developed and then the disease travels upward from there. Sounds very similar to your daughter!
 

Maya142

Moderator
Staff member
It's not always true that after 5 or even 10 years on anti-TNFs that the body won't respond to an anti-TNF. My older daughter was on 4 different anti-TNFs. They worked well for her, with MTX, though after 2-3 years she tended to lose response. She was only switched to a different kind of biologic a year ago. So she was on anti-TNFs for 11 years.
We also know of a kiddo who was on Humira for 13 years and then switched to Cimzia and has been on that for 3 years.

However, recently I have noticed that more kids switched to a different kind of biologic after failing Remicade or Humira. Probably for the reasons @my little penguin mentioned.

In H's case, I'm not sure which she is. But if she has to go on Remicade (which I think a couple studies showed is slightly more effective than Humira for IBD), perhaps you could do her loading doses in a hospital and then switch to home infusions? I have seen it mentioned on JIA forums.

I do understand the worry of COVID but severe Crohn's can cause all sorts of awful complications, and she is so young. FWIW, M was hospitalized 3 times this year and was able to avoid COVID. They are really careful at hospitals - COVID patients are on a different floor and are treated by different doctors and nurses.

If you can't do infusions at all, that limits her options to Stelara (though that has an IV loading dose too).
 
Once E turned 13, she was able to get her infusions at an adult outpatient infusion center. The only restriction was that she could only go on weekdays, when there were pediatricians on site. (The infusion center was at a regular health clinic.) Now that H is 10, maybe you could get permission to get infusions outside of the children's hospital, due to the distance and COVID?
 
We do have a hospital in our small town, although we don't have a pediatrician. I know a boy with JIA here who gets infusions at the hospital however he has to go to ER and wait until the on call dr has time. That sounds awful to me thinking of the stress on H waiting like that. I wonder if Oncology could take her, at least it's nice in there and they are used to doing infusions. I guess I don't know but will open that up as a possibility in my mind.
 

my little penguin

Moderator
Staff member
Most insurances in the US now will do remicade infusions at home with home healthcare nurse
Might be an option in Canada as well
Definitely worth the ask
 

Maya142

Moderator
Staff member
Yes, I'd definitely check! If you have a local hospital and it's such a long drive to the children's hospital, perhaps they will approve it? 4 hours there and back plus roughly 3-4 hours for Remicade would make for a very, very long day, especially in the winter. I'm not sure I could handle such a long day, let alone a 10 year old!

FWIW, my daughter has had infusions in oncology, instead of the regular GI infusion center. In our case, it was an insurance/policy issue. We eventually managed to get approval for home infusions, which were more convenient for a college student.
 

Maya142

Moderator
Staff member
Also, I don't know if this is true but I recently saw a mom post on JIA forums that citrate free Humira is now starting to be given in Canada? I have no idea whether it's true, but might be worth asking about?
 
Also, I don't know if this is true but I recently saw a mom post on JIA forums that citrate free Humira is now starting to be given in Canada? I have no idea whether it's true, but might be worth asking about?
That would be amazing! I'm going to look into it.
 
Interesting consult! In the end we chose to move up to 80mg per week Humira dosage, drop the Methotrexate (party time!), and add PEN.

Now I beg Humira in Canada to give this kid citrate-free. If anyone deserves it - she does.
 

my little penguin

Moderator
Staff member
Glad you have a plan
Hope the med increase works
What was her humira levels at every 7 days ?
Any reason for dropping mtx when she is already flaring ?
 
Her trough level for Humira was 20. So quite high. He said it is a very individual situation and he thinks her body needs more for remission.

He didn't think the MTX is doing much. Plus puberty is on the horizon.
 

my little penguin

Moderator
Staff member
That trough level test wasn’t available when he was on humira . It was only available for remicade then .
His remicade trough level was very high even though he needed every 6 weeks at 7.5 mg versus normal of 5 mg at every 8 weeks

We are suppose to do trough level for Stelara in March to see where his “happy level “ is since he has been doing well at 90 mg every 4 weeks for over two years
 

crohnsinct

Well-known member
Sorry chiming in late here (just emerging from our Covid party). FWIW - Remicade is getting a lot of attention in IBD Med circles as really being the more effective treatment for people who have both small and large bowel disease and especially kids as the dosage is so flexible.

That said, it sounds like you have a good plan. O is one of those kids who always needed a really high trough for her disease to be controlled. So if we went by the label guidelines, we would have given up on a lot of meds before their time. I wonder if it is a VEO IBD thing given it seems H and LP and O all are like that. O wasn't dx'd as VEO but her doc says his suspicion is that she is a VEO kid looking at her growth charts, when the anemia started etc. He thinks the symptoms just started to present at 10 but she was sick a lot sooner.

I know Tesscorm's S got infusions at stand alone infusion centers. Perhaps there is one of those closer to you than the GI? O uses a stand alone infusion center when she is home from college. They are super convenient. T gets home infusions and we LOVE it!

Since she has disease in both areas and knowing how hard duodenal disease is to control, here in the states GI's will try combo with an anti tif and another mechanism of action. So you might try Stelara and Humira. O is on Entyvio and Humira....more because her colon won't respond to anything but the Humira also gives us at least some coverage in the small bowel.
 
I was just thinking about you, CIC. I'm glad you're on the mend. Hopefully the covid hangover doesn't drag on.

H had a destroyed colon at diagnosis but since then (7 years now) she's been presenting more small bowel disease. I'm ok with trying the Humira mega dose but she is a little sad considering we STILL DON'T HAVE CITRATE FREE in Canada. Sorry to shout, it's just that I was on the phone for awhile yesterday contacting everyone that they would give me access to, only to find that while Health Canada has approved the formula, Humira isn't releasing it. Not to mention they discontinued vials so I have to give her two shots instead of uptaking the med into a single syringe. And no, GI doesn't want split day dosing.

But at least we're done with MTX ruining every weekend.

I'm hoping this works but good thoughts on double biologics which for whatever reason I hadn't thought of. Remicade, Entyvio, or Stelara are next but we'll cross that bridge when we need to.
 
  • Hug
Reactions: pdx

Maya142

Moderator
Staff member
Oh i'm so sorry Pilgrim. I guess that mom who talked about it was misinformed.

My daughter used to describe injecting Humira as injecting fire. I'm really sorry poor H has to do TWO shots on the same day. Will they let you add Lidocaine, like @my little penguin did?

We are two biologics for different reasons- one for IBD, one for arthritis. It definitely works better than 1 biologic for kids with severe disease.

My daughter also needs very high doses of biologics for her arthritis. We went all the way up to 20 mg/kg of Remicade, every 4/sometimes 3.5 weeks. She has also been on very high doses of Simponi and Cimzia, as well as Cosentyx. Oddly enough, her IBD also seems to require higher doses of biologics too (I say it's odd because her IBD is not severe or complex, thankfully). Not as high as the arthritis though. But she does always need to be on a double dose of whatever she is on for IBD (and a 4x higher dose for her arthritis!).

She would not be counted as VEO - she was dx'ed at 16, but she certainly started showing symptoms very young. She always had tummy troubles (diarrhea quite often, stomachaches, no appetite) but we lived abroad and blamed the food/water and the pediatrician was not worried at all - said she'd outgrow it. She went from being a great eater to a very picky one. She would only eat very bland things. She also became underweight and anemic.

This all started at age 4-5 and she also was diagnosed with nail psoriasis at 4-5. She complained often about her legs being tired, wouldn't want to walk - we didn't think anything of it. Warm swollen joint(s) starting at age 9 (also more GI issues at 9 too) but symptoms would come and go, so she wasn't diagnosed then.. We weren't even told psoriasis was related to AS back then, so we never made the connection till way after she was diagnosed.

Anyway, I really hope the increase in dose helps her. She is such a trooper with the injections. Maybe you can give her a treat on shot night? My kids always got cake or cookies or ice cream on shot night.
 

my little penguin

Moderator
Staff member
As also is currently on two biologics but only one for ibd/arthritis.
When he was on daily kineret (biologic) shot
Which per Ds burned more than humira
Things we used
Helped block pain sensors some
Answering complex question while getting the shot
Something she has to visualize to articulate the answer -keeping the brain busy really helps
Dum dum lollipops during shot - sugar reduces pain felt during a shot per one study
Putting her thumb over yours so she controls the rate
“Stop” “start” commands while pushing the shot plunger (again about giving her control
Picking the shot location -belly ,arms,legs
Belly always bruised badly
Adding lidocaine to the syringe changes the ph and makes it burn far less
You could then put both syringes in one big syringe if your Gi was ok with it similar to a drawing from a vial .....
I know for ds current second biologics the doc prescribes needles and syringes for me to draw it up .
Maybe a bigger syringe means a longer shot but only one stick .. not sure which would be worse
1 ml is a lot to inject at once
So maybe two is better
I forget how much is in humira

Could you split the dose one shot in am and one in the pm but not more than 12 hours apart ?
 

my little penguin

Moderator
Staff member
Ok just looked it up
One humira syringe is 0.4 ml
So you could get two in one syringe with tiny bit of lidocaine to equal 1 ml if the Gi is ok with that ...
I know Ds gets 1 ml of his biologic every two weeks that I draw up in a syringe .
 

my little penguin

Moderator
Staff member
I forget did she try the mtx pills as well or just the mtx shot ?
I know Ds has a limit -on mtx
All dosages of mtx shot and so not worth it due to side effects
Pills still have side effects but they get significantly worse above a certain mg and are better when he takes 2 mg of folate (1 mg in the am and 1 mg in the pm ) every single day including shot day .
Also adding the upper mg limit has changed for him over the years on what is tolerable
In case she ever needs mtx again
 

my little penguin

Moderator
Staff member
So Ds just saw his rheumatologist
She suggested if mtx pills are causing any side effects (he has some Nausea ,headaches etc..) to split the dose but no more than 12 hours apart
So he would take half his pills in the pm abd half in the am
She says there is no reason to have any side effects if you can avoid them
I will report back next week if that helps
 

Maya142

Moderator
Staff member
I might have said this but Leucovorin might help, if folic acid doesn't do enough. It is folinic acid and in the US, it is prescribed by rheumatologists.

Also, kids' responses to meds may change as they grow up. My daughter was on mtx as a teen. She would be very nauseous and sometimes vomit, and would have headaches and be so dizzy she was literally stuck in bed all weekend, unable to do anything. We tried Zofran, another nausea med, upping folic acid, switching to the shot (she did worse on the pills, it's very individual), lowering the dose etc. She tried 4 different doses over several years or so but was absolutely miserable and told her rheumatologist she couldn't take it. The doc switched her to something else.

Fast-forward 6 years and she re-tried it. She's on 15 mg with no side effects at all. She doesn't even need Zofran. It's honestly bizarre. But we're grateful because it does help both her IBD and arthritis.
 
Top