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Is there any other child taking an adult dose of Humira?

It's been almost a month and HAP is still not approving the PA for my son's Humira. He is 8yrs old, and 68lbs (30kg).
He had 160mg day 1, 80mg day 14, he'll get 40mg on Wednesday (day 28), and then dr wants 40mg EVERY week. We realize this is higher than adult dosing at 40 every other week. He failed Remicade badly, and said he clears the TNF alpha inhibitors faster than normal, and he had a "through the roof" number of antibodies to it. He needs this dose to prevent that from happening again, and especially since this is the last "approved" drug for his age.

Hap only wants to cover 20mg EVERY OTHER week. They say the dose dr wants him on is dangerous. If anyone has any supporting literature about this type of dosing in this age/weight patients, PLEASE let me know. I am so worried that if my son doesn't get this dose, he will clear too quickly and develop antibodies. I am panicked that this is the last drug he can use, even though there are others for adults, and they will probably use them because we won't have a choice.

Any help on this is appreciated!!


Staff member
I'm going to tag my little penguin because her son was put on an adult dose at a pretty young age.

My girls were teenagers so were put on the adult dose. We tried every other week at first but that failed, so we went to every 10 days and finally weekly. Our insurance would not allow weekly Humira without trying every other week - we tried to get that for my younger daughter since her arthritis was particularly severe.

You can appeal though - we have done that for several dose increases. Sometimes it takes a while, but it can be done. It worked for a different biologic for my younger daughter - we got her a much higher dose than the approved dose.

my little penguin

Staff member
Ds was placed in the adult dose of humira
40 mg every other week at age 9.
Our insurance was different
It approved up to every 5 days of humira with the first approval
Regardless of dose.
He slowly worked his way up to every 5 days of injection on a 40 mg dose by age 13.

You can have an independent review by the state for your insurance denials.
Ds also burns through meds quickly ;)
We're in Canada so no insurance advice but our daughter was 20mg weekly at age 4-5, then 40mg every second week, and now at age 6 she's 40mg every other week plus methotrexate 15mg weekly (to help keep antibodies at bay). We move progressively through meds too. She is about 60 lbs.
Have you discussed adding a second drug to inhibit the production of antibodies? You might be able to keep the Humira dose lower in that case.
Sometimes we also add a steroid while we're waiting for a dose change to work.
Lucy is 8 weighs 28kg and gets 40mg every other week. Crohns symptoms have radically improved since we started this dose in January, however she has had two antibiotics one for a chest infection and one for a throat infection during the time so we also had to delay two doses. Hopefully you will get your DS sorted soon.
He's been on Imuran for 14 months now, and they are planning to keep it on with the Humira for at least a year. I have lots of questions for the dr tomorrow. I'm going to talk to her again about the 40mg every other week dose. I just can't find any documenting literature for 40mg every week for 30kg. Thank you all for your responses!!!

my little penguin

Staff member
Really question
Our GI and rheumo will not permit any of their patients to stay on imuran or 6-mp with a biologic since that increases the risk of fatal T-cell lymphoma

They will only use mtx plus biologics
I asked that question last time, and she said that's a matter of practice on which immunosuppressant the facility generally uses. There are only 50 cases of the fatal T-cell lymphoma world-wide. She didn't want to switch him to mtx.