I agree with my little penguin - I would not stop Humira. I would definitely get a second opinion before you even consider that.
My daughter has Juvenile Ankylosing Spondylitis. She was diagnosed with Juvenile Spondyloarthritis, and then it progressed when she was 16, despite treatment with anti-TNFs (like Humira/Remicade).
She was diagnosed with JSpA at 12. She is now 19 and is quickly running out of medication options. The thing with stopping a drug like Humira is that you can build antibodies to it if you stop it, and it may not work if you need to restart it. There are only a few drugs used for JSpA and so your options are very limited - even more so for kids who are diagnosed at a young age.
My daughter has always been on anti-TNFs but the disease progressed anyway. She has permanent damage in her SI joints and her hips and her right knee. We expect that she will need a hip replacement in her 20s. She is in pain all the time and is often up all night in pain.
I would not go off an anti-TNF even if he is doing well because research shows that most people with AS flare within a year of stopping anti-TNFs. The last thing you want is for the disease to progress. Once damage is done, it's done and there is nothing you can do about it.
And then if you have to put him back on Humira, it may not work and he will have lost one of his drug options (and since there are only 4 anti-TNFs, it's quite a big deal to lose one).
I would definitely get a second opinion and do some research before considering taking your child off Humira.
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