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Antiphospholipid Syndrome

Need Some Support

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12 years 4 months ago #20148 by Kelly H
Need Some Support was created by Kelly H
Hey guys,

I had my follow up with my Hemotologist the other day. Turns out I've tested positive for Lupus Anticoagulant and feeling pretty crappy about it. Does anyone here have both ITP and LA? This is so new to me that I don't even know if I'm using it in the right context. Wednesday I'll be receiving my first treatment of Rituxan and I'm actually concerned about my platelets going up now.

Kelly

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 4 months ago #20154 by Sandi
Replied by Sandi on topic Need Some Support
I have Anticardiolipin Antibodies, which are also APS-related. SO far, I have not had a clot. I take an aspirin right now for prevention, but not sure if that does anything or not.

It can be a scary diagnosis. Have you had any problems? Are you going to use blood thinners?

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9 years 7 months ago #43501 by Tcammauf
Replied by Tcammauf on topic Need Some Support
My 12 year old just had a high result for Cardiolipin IGM. She has had ITP since April and is not responding to treatments. Her count was 0 for five weeks and is now 1 after IVIG to replace her antibodies after Rituxun. If she has APS, how does that affect her ITP treatment?? Can she still try Whinro or NPlate?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago - 9 years 7 months ago #43528 by Sandi
Replied by Sandi on topic Need Some Support
Yes, she can still try Win-Rho or N-Plate, but needs to be careful to not let counts get too high. N-Plate can also cause clotting as a side effect, so you have a bit more of a risk with that one.

Antibodies can come and go. I've had elevated IgM antibodies on and off for the past 9 years. I've never had any symptoms though....does your daughter?

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9 years 7 months ago #43687 by Tcammauf
Replied by Tcammauf on topic Need Some Support
She has no symptoms just the ITP. Her platelet count keeps going to and staying at 0. She received Winrho today. Her count was 0 this morning and was 7 this afternoon. I'm hoping the response last ps longer than a week. She feels terrible from it though.

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