So I’m curious about genetics testing /immunodeficiency testing. What would this help us understand?It’s common for you to need additional “help” when starting humira especially in kids
Before giving up on humira
Most Gi add
Steriods -oral pred or buesonide
Een -formula only
Some kids require all three together plus humira
And if humira is every two weeks they go to every week
took my kiddo 5-6 months to get humira to work
At every two weeks and that was not starting in a flare but switching from remicade .
They started him at 20 mg every 2 weeks (he was 9 but at the max weight of the kiddo dose )
So after three months -switched to the adult dose of 40 mg every two weeks .
Later added mtx
Then switched to every 10 days after a year or two
Every 7 days after another year
Every 5 days after another year .
then had a non ibd related surgery
Held humira and it stopped working when it was restarted.
get a second opinion at another pediatric hospital
See about genetics testing /immunodeficiency testing as well.
a lot of things mimic crohns and don’t respond to the same meds
a few kiddos didn’t respond over the years but that was after they tried adding all of the above plus humira
The numbers as reported on humira.com:Common. If you take a close look at the studies, you see that biologics including Humira only work well for 1/3 to 1/2 of patients. There's a lot of fear about switching from one thing to another, but if Humira isn't helping you need to try something else.
Very helpful, thank you!Yeah that ^^^
Two things to remember those studies are adults
So pediatric disease isn’t studied as well
And when studies are going on they put those who have the most severe disease (failed other options ) in the studies since they don’t have much to lose on trying a “new” drug versus those in remission on immunosuppressants or remicade .
out of kids who showed up on here only a handful didn’t have a good first response to anti tnf alpha (remicade /humira )
But it took a lot of meds added at the beginning to get the inflammation down to a level humira could take over . Or remicade or …
Genetics testing -some kids have auto inflammatory disease or chronic granulomas diseases that mimic crohns .these need to be ruled out especially if meds don’t seem to be helping as much
immunodeficiency because if the kiddo has this again the body mimics symptoms of crohns causing gut inflammation but once the immunodeficiency is treated the symptoms go away
This is the opposite treatment used for Crohn’s disease
some lucky kids have more than one thing going on
My kiddo has auto inflammatory neutrophilic disease plus crohns plus juvenile arthritis
So the waters and treatment get muddy fast