Hi all, I'm new to this forum having been diagnosed with APS by the wonderful Professor Khamashta at London Bridge 2 weeks ago. Briefly, my background is: history of blackouts/fainting for 20 years, became pregnant in Jan 2014, developed preeclhowever lying 29 weeks and then gave birth to low birth weight stillborn daughter at 29 weeks, followed by suspected DVT and multiple bilateral pulmonary emboli.
I went to see Prof Khamashta as the NHS hematologist was planning on stopping my warfarin therapy after 6 months so they could do the Lupus Anticoagulant test.result doa2 and Anticardiolipin were undertaken whilst on warfarin and were negative, however the LA teat came back borderline but was unreliable as I was on warfarin at the time. The idea of coming off warfarin terrified me as I was convinced I had APS (long family history of DVT on both sides also.) Prof Khamashta undertook my LA test using the Taipan Snake Venom Time test which came back positive with a result of 1.16 - the reference range was up to 1.14.
I have two questions if anyone is able to help - I have been diagnosed as APS, however would like to know does a result of 1.16 on my LA screen mean that the antibodies, whilst positive, are in the "low titer" category? does anyone know how 1.16 compares to others on this specific TSVT lupus anticoagulant test?
Also, I have read that a lot of people are saying rivoroxiban is not yet recommended for APS however professor Khamashta has recommended this for me for lifelong anticoagulation and says this what patients are prescribed now instead of warfarin at St Thomas'. I trust prof Khamashta, but am concerned about what other people are saying? I have been on warfarin for 7 mths (currently 9mg daily) and my INR has fluctuated somewhat but now tends to float around 3.0 (well, has done for the last 2 months). I was happy to go on to rivoroxiban but am wondering if I ahould now stick to warfarin and buy a coagucheck machine so I can self test?
Also, statistically, as I am only LA positive (and negative Anticardiolipin and Beta2) does this mean I am less likely to suffer recurrence than someone who test positive in all three tests?
Looking forward to the Patients Day in May and will no doubt see many of you there. Thanks in advance, Lucy