APS misdiagnosis???: Hello, this is my first post... - LUPUS UK

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APS misdiagnosis???

stillwaiting profile image
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Hello, this is my first post here. My name is Lynn. Eleven years ago, after 2 late miscarriages (17 weeks) and several stroke like episodes I was diagnosed with Primary Antiphospholipid Syndrome and have been on warfarin ever since with bridging doses of clexane when inr is not in range. I have continued to have some TIA like symptoms approx twice a year. In the past year I have had no Antiphospholipid antibodies in blood tests. I have moved house and my new rheumatologist thinks I have lupus with secondary APS. My new haematologist is now suggesting that a high treatment rather than preventative dose of Apixaban would be a better option. I would appreciate any thoughts you may have. I am scared of more strokes to be honest. The decision is mine and I will see the rheumatologist in a few weeks. Thank you.

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stillwaiting
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Star13 profile image
Star13

As you have put the same question on the APS Forum and I have answered you there I won't repeat myself again. I will add though, regardless of wether you have primary APS or Lupus with secondary APS, with the symptoms you have had the treatment remains the same. Antibodies come and go and just because yours seem to have faded its no reason now to stop treatment. As you say you don't want anymore strokes and a DOAC is not indicated. There are old sayings that come to mind "don't rock the boat" and don't try and fix what isn't broke". If you have done well on warfarin Id just carry on, after all its about you being confident and feeling secure in your medication and not worrying all the time that something horrible might happen or not!!🙂

stillwaiting profile image
stillwaiting in reply to Star13

Thank you so much for replying.

Chris21 profile image
Chris21 in reply to stillwaiting

I can’t add anymore than star 13, just best wishes with your decision 🙂

stillwaiting profile image
stillwaiting in reply to Chris21

Thank you Chris.

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