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New Here

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12 years 8 months ago #30512 by cornflakegirl3
New Here was created by cornflakegirl3
I am new here and have a few questions. My daughter has had ITP for a little over a year. She has 2 other autoimmune disorders and for the past few months she has been getting IvIg. In the beginning it worked great bringing her numbers up to 158K. Over the past 4 weeks it has not be able to raise her numbers much.

Fortunately Jordan does not bleed much so even with a platelet count of 5K she only has petecheia and bruising. With that said she is not able to participate in most of the activities she enjoys so we are looking at different treatment options. She already had Rituximab and it didn't really work and she's been on steroids, although she hates them and now we try to avoid them.

They are talking about trying Nplate and I was wondering if anyone has tried that. Thanks for the help and advice. I am looking forward to the support and understanding because this is a hard road that most people don't understand.
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12 years 7 months ago #31005 by dawn1979
Replied by dawn1979 on topic New Here
Hi
My daughter Brianna has had itp for nearly 2 years now she has had her ups and downs. I put her in a bubble but I had to learn to deal with it. She bruises but usually doesn't bleed very often her counts have to be under 5 for that. She has been playing sports a lot her counts are usually under 40 but lately she has been doing really well. She knows if she hits her head to come home right away otherwise she is pretty good.
She has done ivig gets really bad headaches when she does. She has been on prednisone and had all the side effects. Right now we do the watch and see approach
Dawn
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