Sticky Blood-Hughes Syndrome Support

Am I cured?

I tested positive for LA in 2007 after I had a stroke in 2006. Since then I haven't had any clots and I have two negative tests recently. So does this mean I no longer need to worry about it coming back?

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Hi, the answer is no, we can all go in and out of positive/negative testing. With your history of passing tests and your stroke I would not be taking my eye off the situation. MaryF

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Yes, exactly!

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In a word No. your tests may say your antibodies are negative but once diagnosed you have APS for life. Do not let anyone take you off anticoagulation. There are studies that show those with negative results now termed as seronegative, being taken off anticoagulation and suffering from clots.

If your disease is well controlled then stick with your regime.

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It happened to me! A Goofy Medic (PC) saw the rosy results, took me off Coumadin. Six months later I nearly died in ER and stayed there for 7 days.

It is yet another issue I argue with these Medics about. They can't know it all but they THINK they do.

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So glad you are here to tell the tale.

SAD. “Standard American Dialogue. “ ( I’ve decided it’s the anacronym for this particular kind of APS conversation.)

It’s just pain ole SAD.

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Hi Johnn,

If you have not had any symptoms after you stopped Warfarin and your stroke you can be lucky.

But you can not stop Warfarin when diagnosed with APS. Plavix (or Clopidogrel) is an antiplatelet drug and works in quite another way than Warfarin.

Most of us get other symptoms from this illness when we stop anticoagulation or lower the dose very drastically. I hope you now has got a Specialist of autoimmun illnesses who has got patients like you before but it does not sound like that as he or she has stopped your anticoagulation. A Specialist of APS knows very well never to do that.

Where do you live? I live in Sweden and I hope you will stay with us here as you will learn a lot from our knowledable and very friendly and helpful members.

Best wishes from Kerstin in Stockholm

PS You could read "Sticky Blood Explained" by Kay Thackray. She has got APS and writes about a lot of symptoms and it is also good to read for relatives to understand how it is to live with our illness. DS

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Better yet, TRY to persuade your Primary Care Medic to read it! They usually cannot see beyond their egos and diplomas but it's worth a try.

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🤣

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