Sticky Blood-Hughes Syndrome Support
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Hello everyone, it's been a while since I last posted on here. I thought I'd update and also offer advice to those in a similar situation. I have so-called obstetric APS - that is my condition thus far only seems to affect pregnancy. After 3 + miscarriages and a stillbirth I had a healthy daughter in 2014. I'm now 17 weeks pregnant again (so far so good). For me APS caused infertility, I am 8 years into my journey of trying to complete our family. Long story short I need heparin in order to conceive successfully- in fact once heparin was taken I fell pregnant straight away on both occasions without complication. Now I know from my own experience this is an emerging field of medicine. My haematologist is switched on and knows that APS caused infertility in *some* women. However, when I was scanned by the recurrent miscarriage consultant she totally poo pooed it and told me flat that evidence suggests that the optimum time to take heparin in pregnancy is 6 weeks in. For me this is too late as had been proven in previous pregnancies. I'm on a mission to change this perception. Not sure how yet but I want my haemotologist to communicate with this consultant to put her straight and use me as a case study. My point is how many other consultants are there out there in the obstetric field giving this advice?? I'm lucky as I've pushed and pushed and researched and researched on this condition and I've been given the gift of parenthood. How many women out there will not be as fortunate? Too many.

On a different note, after 5 years and 6 positive lupus anticoagulant tests in that time I'm now now testing completely negative (even the most sensitive one). What a strange condition this is!!! Love and hugs to all those still battling x

2 Replies

I hate that they just won't say" I don't know" and then babble on trying to justify what they don't know. I am happy you have been successful, congratulations🎉🎉🎉


Hi Hopingforababy, thanks for sharing your experience. I am 19 weeks pregnant and I am on heparin (I have lupus and positive. Aps anyibodies but never experience strokes or miscarriages before... although I struggled with infertility for years and only got pregnant with ivf). My current consultant does not think it is necessary for me taking heparin at this stage but I am too scared to stop. Last time I saw them they said I should stop and start again at 28 weeks for other risk factors but this does not make sense to me. I also think that heparin helped me to get pregnant. However doctors seem to disagree on this...


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