Stelara effectiveness in remission and growth for Teen

[OmShiv]

Hi,
My son close to 15 got diagnosed with Crohn's. It's very troubling and stressful time. Dr. here insist on taking something immunosuppressant like Stelara. I want to check with other parents on what was your experiences with Stelara on getting healing and getting into remission and also how it helped your kid back on growth path. I heard since Stelara is relatively new, help on growth hasn't been studied well. Some drs. for that reason suggest Remicade or Humira.

Also, if anyone tried successfully not going on LT this medication and used initial healing with meds like Entocort (for very short term) and then using some alternate medicine/therapy/food/yoga/excerise etc to keep healing/remission and have kid growth back as well.

Thanks in advance, really hoping this forum will provide me with good guidance and support!

Thanks,
O

 

[Pilgrim]

My daughter, 12, is taking Stelara now for about 18 months after about 6 years of Humira.
Her growth is great and we've had less side effects using Stelara than other drugs, so far.
Personally, our experience with steroids, methotrexate, Azathioprine...were terrible. Humira was good for a long time until she needed very high drug levels to keep her well. At very high drug levels she had side effects.
We have had great results using EEN (formula-only diet) to bring down inflammation. We have also used the CDED diet very strictly to bring down inflammation. Both of these done along with medication.
When we tried alternative therapy, we continued to run regular bloodwork, and Fcal testing to see what was helping.
None of us parents wanted to use medications which seemed very scary. I'd say most of us are grateful we did, and some of us might say we wish we hadn't waited so long.

 

[OmShiv]

Thanks @Pilgrim. I'm glad it's working out fine for your Kid. Just another qs- while trying alternative therapy, were you off medicine that time completely and making sure with blood work, lab etc that internal things are fine or it was still along with medication such as Humira?

 

[my little penguin]

My kiddo has been on Stelara for over 5 years age 13 on-he is 18 now
He started biologics at age 8 (remicade 8 months and then humira for 5 years )

He was 50 lbs at dx (age 7 ) and tiny-25%height
Started remicade etc…
He met his original age 2 predicted growth and weight
5’11” so grew significantly

we have seen others with crohns who delayed biologics and they are still tiny that were dx around the same time

he also did een (formula only ) twice with biologics
And supplemental een (shakes 2-3 a day ) plus food and meds

the growth window is so short we felt it was better to maximize it with a healthy gut which promotes growth

before biologics
Lots of crohns kiddos were known to have growth failure
Once the growth plates close that’s it
No amount of meds can fix growth afterwards

 

[Maya142]

I would be hesitant to do anything alternative without doing a medication. You're risking permanent damage to the bowel - strictures (narrowing), abscesses, fistulae, failure to thrive (growth failure, inability to gain weight, malnutrition) etc.

The diet therapy that has been shown to work (actually induce remission) in studies is Exclusive Enteral Nutrition - 100% formula and no food. Typically to induce remission, you stop all food for 6-8 weeks, sometimes longer. It's usually used just to induce remission because being unable to eat is very hard on kids, particularly teens. Generally, you induce remission with EEN and start a maintenance medication like a biologic or immunosuppressant at the same time, since they take time to work. Biologics tend to work faster than immunosuppressants like Azathioprine and Methotrexate, but can still take 3 months or more to work. The other option is to use steroids (like Entocort or Prednisone) as a bridge until the maintenance medication kicks in. Steroids work well, but have lots of side effects (though Entocort typically has way fewer side effects than Prednisone), including interfering with growth, weight gain, puffy face, acne, insomnia etc. That's why they're used for as short a time as possible.

As for which biologic to use, it's definitely true that there is less data with Stelara. And it does take longer to kick in - sometimes as long as 6 months. I am not sure about the data on growth, but you could always get another opinion from another pediatric GI about which would be best to try first. My daughter has been on both Remicade and Humira and her Crohn's has done really well on both of them. For her, Remicade kicked in fastest - it took maybe 2 weeks to see a difference and 8 weeks before she felt significantly better. She did need Entocort while we were waiting for it to kick in. She was also on MTX at the same time.

Another option would be to see an endocrinologist and see which drug they would recommend from a growth perspective.

My daughter was 16 when she was diagnosed so she was really mostly done growing when she was diagnosed.

 

[my little penguin]

Understand there will not be any growth studies for Stelara since technically it’s only approved for 18 and up for crohns
Over 12 is for PsA

worked well in my kiddo
Folks who haven’t seen him in years are shocked by how tall he is

 

[Pilgrim]

Thanks @Pilgrim. I'm glad it's working out fine for your Kid. Just another qs- while trying alternative therapy, were you off medicine that time completely and making sure with blood work, lab etc that internal things are fine or it was still along with medication such as Humira?

The most recent time was when we used EEN then CDED (diet) as a bridge therapy when Humira was dropped and we were waiting for authorization and set up of Stelara - and knowing that it takes Stelara a long time to work. We had labs at the 3 month mark, which showed great improvement but I didn't know if it was more diet or meds. I assumed it was meds, liberalized the diet, did labs again after a few more months and there was an obvious difference in a negative direction. Back on the diet and things improved. After more than a year Stelara took over and she could relax the diet with no negative affect on labs.

 

[Pilgrim]

Want to add that the meal replacement shakes (Boost, Ensure etc) have been a staple here with both of my kids with Crohn's and I think have been a huge help keeping growth happening. I hated the idea of those too at first but now I keep the fridge stocked. At least 2 a day for each of them. Ages 12 and 14. Their growth is phenomenal. One kid takes Humira, the other as I mentioned uses Stelara.