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LOOONG response!

June 20 2008 at 9:10 PM
Isabel  (no login)


Response to An Amanda update....

 

I'm sorry Amanda is having such difficulties. As you may (or may not remember), K. had great difficulties around that age as well. Despite Remicaide treatments every 3-4 weeks, she was in a constant Flare. She had been on Remicaide for more than 3 years at that point, and rather than getting better, she was getting worse. Didn't matter whether she just had remicaide, or whether it was 4 weeks into the treatment. It turns out she developed antibodies to the mouse protein used to make Remicaide, this was the cause of her flare and pseudo lupus symptoms. Due to a complaint on my part, we were dismissed from the rheumy's care and had to find a new PR.

Honestly, it was THE best move ever. The new rheumy (whom we've been seeing now for 3+ years) is absolutely AWESOME. He was APPALLED at the condition she was in when he first saw her. IMMEDIATELY got her approved for humira weekly. (It's an every other week drug, but she was BAD). We just recently switched to every other week. Hopefully, she will not flare with this switch.

I DO believe hormones play a HUGE part in preadolescent flares. Unfortunately, they can last a few years. I wonder how much research has been done with this.

We continue to battle eye issues, but overall, she's doing well. She just turned 17 a week ago, passed her road exam for her driver's license. She's an awesome competetive swimmer, placing in the championships (1st, 6th, 8th and 14th place) in her events. (Her first place was 200 FLY!) Just finished her Jr. year of High School. She coaches 8yr olds (and under)kids on the one team she swims for.

SO....that was long winded. Just want to say, hang in there, things DO get better, although I honestly didn't believe it at the time. I just wish eyes wouldn't be such an issue (although you know all too well about that).
Hugs to you and Amanda (and whirlwind Sara!!)

 
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