10-29-2018, 11:05 PM   #1
BoyMama2000
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Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Humira v Remicade

My son is 20 and it appears that Stelara is not doing it for him. They upped Stelara to every 4 weeks and it only lowered FCP a bit, then added in uceris and FCP went to 20. We hoped that the increased dose of stelara would then kick in and we will get confirmation from his FCP later this week, but his stool didn't look good when I just collected it. If his FCP is high again, he will move to a new med.

He is a junior in college and is very muscular with a very high metabolism so they had to increase Stelara since his levels were very low. His GI seems to lean toward Remicade (he has never has Remi or Humira before) since it is easier to dose. I do wonder if he would need a lot of humira given his need for a lot more Stelara.

He will be doing an internship this summer and it will be intense....60-80 hours a week (investment banking). Given this, do you think Humira or Remicade will be better. I would hope he could get a half day off to get an infusion but have no idea how that will work. As important, do you all think one is more effective than the other for most people? He has had Crohns since age 13 but it was mild then (only in terminal ileum), it is now throughout his large intentine and rectum. At least it was on his last scope in March.

I would love to learn the pros and cons of both and your experiences with either treatment.

Thank you all!
10-30-2018, 08:17 AM   #2
my little penguin
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Join Date: Apr 2012

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Ds has been on both.
Itís just a matter of what med will actually work
Remicade more likely to cause reaction
But can be up dosed easier /more frequently etc...
Works in 6-8 weeks so faster
Ds needed 7.5 mg/kg every 6 weeks at age 8 (he was dx at age 7)
But had two allergic reactions (very allergic kiddo multiple drug allergies )

Humira
Took almost 6 months to work
Needed higher dose 40 mg vs 20 mg -Ds was only 9 at the time
Then higher frequency
Had to add mtx
And keep upping frequency every year
At the end of humira was on 40 mg every 5 days (max dose )
Lasted over 5 years till he switched

Currently on high dose Stelara (almost 15)
90 mg every 4 weeks plus mtx
Mainly for his Arthritis
Crohns seems ok
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DS - -Crohn's -Stelara -mtx
10-30-2018, 08:59 PM   #3
Maya142
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I would go with Remicade. You have much more flexibility with the dosing of Remicade. You typically start out at 5 mg/kg and infusions are done every 8 weeks. But MANY kids and teens and actually young adults, metabolize medications faster than older people.

You can go up to 10 mg/kg every 4 weeks. That is the max FDA approved dose. But some doctors are using "high dose Remicade" to get refractory disease under control. It's done in JIA and for uveitis - I know some parents on the forum have had their kids on 15 mg/kg to control the inflammation.

My daughter went up to 20 mg/kg and was also on MTX/Imuran/Arava with Remicade. Immunomodulators like MTX are often used with Remicade to prevent the patient from making antibodies to the drug.

Humira is an option too. There is now a citrate free version that does not burn. It is more convenient for a college kid - a shot every 2 weeks or every week (depending on what he needs).

The only issue with Humira is that you can only play with the dose so much. You can go from biweekly to weekly or every 5 or 6 days.

In terms of efficacy, no one can say. It depends on the kiddo. But Remicade is better studied for IBD I think. And it has been used longer.

My girls both did better on Humira than Remicade. Remicade did help them, but for a shorter time than Humira. My older daughter lasted 5 years on Humira, and the younger one lasted about 2 or 2.5 years.

Good luck!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-30-2018, 11:07 PM   #4
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Thank you for your input! What are your girls taking now? It is certainly a journey of trial and error!
10-30-2018, 11:08 PM   #5
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Little Penguin...glad your son is doing well on Stelara!
10-31-2018, 04:25 AM   #6
Maya142
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Older one does not have IBD, just AS (Ankylosing Spondylitis) - she's on Cosentyx and MTX. My younger daughter has had a more difficult journey because her AS has been active causing severe pain. She is on Cimzia for her IBD and another IL-17 inhibitor like Cosentyx.

Oddly enough her AS does not respond to anti-TNFs like Remicade, Enbrel, Simponi etc. but her IBD responds to them beautifully.
10-31-2018, 09:08 AM   #7
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
The human body remains a mystery. I am always hopeful that we will someday figure out why certain meds work for some and not others .
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