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Hi all! I have been away awhile...question for those with humira experience...

February 4 2010 at 8:13 AM
Amy  (Login amynthegirls)

 

my daughter Lilly has poly JIA and has been plugging along pretty well. We have her currently on MTX and Enbrel and although a bit of the iritis is back, she's doing fairly well.

Two years ago we had a new rheumy doc who was real high on humira. We agreed to try it and although it worked well for her eyes, her fatigue didn't improve much so we switched back to Enbrel. After about a month or two on the drug Lilly started to gain weight - like quite a bit more than you'd expect. It might be her age - she was 8 at the time - but she put on like 30 pounds! I didn't think anything of it at the time but I was so perplexed because her appetite was much greater than normal but she seemed to be gaining even more than what I'd expect from what she was eating. The strange thing is that now that she's been off the humira about 6 months things are slowing down and the appetite has backed off and she's not gaining as much. Hasn't lost anything (she's almost 10 and 100 lbs!!) but seems to be stretching out a bit.

I've seen some reports of this happening in adults but wondered if anyone else noticed this.

We also have experienced tummy pain with Lilly. Had her belly xrayed and she had build up of feces (TMI sorry!!) on her colon. We were prescribed miralax and that works, but if I stop for a few weeks it seems to come back. Wondered if this was 'just her' or if perhaps it was any of the meds. The docs just look at me like I'm a crazy mother when I mention it.

Thanks all!!

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