8yo failed Remicade today; talk of Humira

[nelsonshan]

My 8yo son had another infusion reaction just seconds into his 4th Remicade infusion despite premed with Benadryl/Tylenol/solu Medrol. He had flushing, chest tightness, vomiting, pulse ox 80. Now they want to do Humira as soon as possible (once ins approved)/ hopefully within 1 to 2 weeks. They are talking about doing an adult dose weekly after the 3 loading doses. They think he may be a kid that just needs a higher dose and frequent intervals to avoid antibody formation. They are checking Remicade level and antibodies from today's bloodwork but won't know for at least a week. Just wondering if there is anyone else out there with young kids moving on to Humira and how it's going. Feeling very sad, as we were hoping to get several years out of the Remicade.

 

[my little penguin]

Ds was 9 when he started humira (reaction to remicade twice )
He was started on the junior dose even though he was at the max weight ( :duh: )
Once he got the "adult dose " -weight based not age - he was fine
We have had to increase humira over the last 4-5 years slowly and add mtx (arthritis)
He is now on humira every 5 days without issues at age 13
And has had clean scopes since starting humira

It does burn so we add lidicaine to the syringe
Syringe is better so you can control the speed less painful

A pain free humira is supposed to be available in the us before summer

Good luck

 

[pdx]

Has your doctor talked about adding methotrexate, to help avoid antibody formation to the Humira?

 

[Maya142]

I agree about adding something like methotrexate - that is most likely to prevent antibodies so he doesn't go through meds too fast.

Both my daughters have been on Humira.

The loading dose of Humira is not fun - be prepared for that. For my younger daughter (who was on the adult dose) it was 4 shots on day 0 and 2 shots on day 14. The shots really burn. We used to let the shot warm up to room temperature, ice till her leg was really cold and then do the shot while watching TV so she was distracted.

She did get used to it over time and It worked very well for her. The loading dose isn't fun because it's so many shots but after that she was fine.

I recommend using the syringe - we used the pen and it really hurt since you can't control the injection rate. My older daughter is still on humira and recently switched to the syringe and says it is much less painful.

There is supposed to be a new formulation of Humira coming out within the next year that doesn't burn. Not sure when though.

Neither of my girls had any side effects or reactions with Humira.

Good luck!!

 

[nelsonshan]

He's been on Imuran for over a year (Jan 2016). The plan was to keep him on at least 6 months with the Remicade, but we didn't get that far. They said they will keep the Imuran with the humira, but I don't know if that's for 6 mos as well or indefinitely.

 

[polly13]

My daughter has been on humira and methotrexate for 4 years - she is 8. She failed infliximab also, but humira has been fantastic for her. Had a little blip recently and humira was increased and all good again. Good luck with it

 

[Jenn]

Sorry to hear about the reaction to Remicade. My son moved to Humira after developing antibodies to Remicade. He's been on it successfully for 5 years now at the 2-week interval dose. Started out on the child-dose but moved up to the adult dose once his weight was reached. He overlapped with 6mp for about a year, but is currently only on Humira. It's been a life saver. The shots are painful. We do the syringe instead of the epipen, for slower administration, ice up for 15 mins before while letting the syringe come to room temp. Best of luck to you and your son!