funny- he just texted me tonight to tell me he is having some back pain. He has had some lower back and hip pain before, but mostly a lot of stiffness there. It is mostly controlled by the meds, although I suspect that compared to a "normal" person he has more pain than most. When he first started his Enbrel 8 years ago, he commented he didn't know that he hurt so much until he started his meds and it felt better, as he just thought that's the way everyone felt. I think he probably had symptoms at a very young age (4 or 5) because he always had a funny, stiff walk- we just didn't know any better.
He does routine blood tests every 3 months and has never had any issues with blood work. The Dr. was actually more concerned about both the methotrexate and the sulfasalazine than about his Humira so I'm glad he has been able to discontinue both of those. Enbrel/Humira have been like miracle drugs for him and hopefully will continue to work. It was a hard decision originally to put an 11 year old on these drugs, but his quality of life would not have been good without them, and we feel like with blood tests, we are keeping a good handle on any harmful side effects.
He has had great results so far, but I do think it is from a combination of meds and constant physical activity. I know that when he can't exercise, he stiffens up quickly. Lucky for us he is our "active" child!!!