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Antiphospholipid syndrome

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Unread 12-25-2012, 01:23 AM   #1
Woollahra
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Anyone with antiphospholipid syndrome having trouble stabilising Warfarin medication? Having a weekly INR is hard going.

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Unread 12-25-2012, 10:42 AM   #2
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I have APS and tried warfarin for 2 years. I have gasgtroparesis so maintaining a stable INR was most difficult...even with a home INR monitor. I had to switch to injectable low molecular weight heparin 8 years ago.
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Unread 12-26-2012, 12:04 AM   #3
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Anyone with antiphospholipid syndrome having trouble stabilising Warfarin medication? Having a weekly INR is hard going.

Woollahra
The Roche INR self monitoring machibne is not suiable/reliable for antiphospholipid syndrome. Roche doesn't advertise this fact and doesn't do refunds. Roche sales staff didn't even know anything at all.

I keep getting the excuse 'it a rare orphan disease'.

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Unread 12-26-2012, 12:39 AM   #4
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Anyone with antiphospholipid syndrome having trouble stabilising Warfarin medication? Having a weekly INR is hard going.

Woollahra
Thanks for your reply - I've been told I'm not a suitable candidate for anything other medication except Coumadin.

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Unread 12-26-2012, 08:05 AM   #5
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There is nothing about APS itself that should cause the machine not report an accurate INR. Of course coumadin is greatly affected by foods high in vitamin K, so you must watch what you eat.

Why is coumadin your only treatment option?

Have you had a thrombotic event...or just elevated aCL? If so, what type of event?
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