Sticky Blood-Hughes Syndrome Support

Borderline Positive lupus anticoagulant, other aps antibodies negative

Had 2 twin pregnancy losses , of which one of the twins in my recent pregnancy which I conceived through ivf ,had turners syndrome, hence terminated. I have been diagnosed with borderline Positive lupus anticoagulant but rest of the antibodies in the panel are negative. I m currently 17 weeks pregnant, on aspirin 75mg and prednisolone 5 mg... Confused whether clexane has to be continued as I took till 12 weeks of gestation.. my immunologist wants me to continue but obstetrician has stopped... I want a healthy baby after this prolonged struggle and pain of losing 4 babies (2 pairs of twins).. kindly give advise according to your experience

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Hello and welcome and firstly Im so sorry for your losses. Where are you situated as this will help us advise you better. Are you under a APS specialist yet and or a pregnancy clinic that deals or specialises in APS cases? If not then I would strongly suggest that you are. As I said if we know where you are we may be able to help point you in the right direction.

We are not Dr's on here but can talk from personal experience or from what others have experienced. Each person is also different so medication given to one person may be different for other reasons. On the whole the main drugs given to people who have APS who are trying for a successful pregnancy are aspirin, LMWH and Plaquenil. I have not heard of steroids being used personally but as I say they may have individual reasons for giving them to you.

Please let us know how you are doing.

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Thank you, I m from India, I have also been started on hydroxychloroquine 200 mg once a day but due to opposing views of the immunologist and obgyn , I have stopped for past 4 weeks... My DRVVTor LA screen to confirm ratio being 1.22 and the positive result reference range is 1.2, so it's like borderline Positive, hence being in the grey zone confused... But if you could out of experience if the pregnancy outcome significantly improves I will restart clexane... I m really grateful for the concern from your end

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Hi- do you have any symptoms of APS apart from the pregnancy issues? Also were you positive for the test during your first pregnancy or was it after and was it repeated after 12 weeks and was the result then positive or negative? Are you actually in India now?

Sorry for all the questions but it will help us understand.

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No i dont have any symptoms of aps, my first pregnancy, both the fetuses showed delayed development, saw heartbeat only in 10 weeks which was already in bradycardia range and lost them spontaneously by 11 weeks.

I was not tested for aps in first but i couldn't conceive for next 2 yrs, then was evaluated which showed among aps antibodies only lupus anticoagulant was 1.3 , then started on medications... i underwent ivf in march 2017 which was twins and contd LMW heparin, hydroxycloroquine, aspirin but i lost first twin at 6 wks, and second i terminated as it was Turner's syndrome with generalised edema, ie hydrops.. later conceived naturally in july this year and now till date scans looks alright but repeat lupus anticoagulant at 6 wks of this preg is 1.1, n repeat at 17 wks is 1.22.. so confusion arises if to continue LMW heparin as my gynaec feels its not required

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Yes i m still in india.. of the three aps testing done firstvtime positive and next it was negative and these were from same labs... recent testbrepeated in a good standardised lab is just 0.2 uniits more than normal value

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I can tell you that some of us have sometimes negative antibodies but still symptoms. Others have always positive antibodies.

That is why we need a Specialist who understands these issues.

Usually the anticoagulation should never be stopped if we have HS/APS. Please tell your Doctor about this.

Best wishes from Kerstin in Stockholm

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If you can't find a specialist in India with the experience of treating people specifically with APS then I would perhaps write an email to London Bridge Hospital and ask Prof Hughes if he will give any advice for your Doctors or the name of a Doctor near you in India. Failing that you may need to consider travelling to the nearest place where they can advise you.

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Sure, thank you, that would be helpful

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