Anyone have a negative APS test at start of pregnancy and gone on to test positive mid/later pregnancy?

[Lucky67]

Come across someone on an unrelated forum who has lost a baby due to APS. A family member died of APS related condition and so she was tested -first test positive, second test negative - her consultant said a false positive. Wasn't treated, went on to lose baby - then test positive for APS again.

(This makes me so angry - but that's another story)

Now pregnant again - coming up to 20 weeks - under better care. She tested negative for APS at start of pregnancy.

Her (seemingly knowledgeable) consultant has come across some recent research showing a link between placental abruption and heparin - so at the moment she is on 150mg aspirin and frequent growth scans - but will go onto heparin if she has a positive APS test -

Did say this forum existed...maybe she will head over sometime - I said you were all nice and helpful! - but for now wants me to ask if anyone has tested negative in early pregnancy and then positive in later pregnancy?

(And I guess anyone come across the heparin and abruption research/argument???)

[MaryF Administrator]

If a test has been passed, APS should be considered a definite, bearing in mind that many are seronegative and still have the disease also. With that history she should be on more than aspirin. The actual charity website is

hughes-syndrome.org/ - the site under self help contains a list of specialists with knowledge of APS.

If they have already passed a test and have history of loss during pregnancy, she needs more detailed care and that included more medication:

I have never passed a test but have Systemic Lupus, (been sero negative with that for decades, only just passed a test), also I have Seronegative Hughes, as do my sisters, one sister lost seven babies, we have all had clots in our legs and my sisters lungs also. Despite not passing a test I had multiple clots during first pregnancy, I owe all my children to the skill administered to me at St Thomas' years back, and stayed on Fragin early on until 6 weeks after. I now take Aspirin twice daily, but this could change at any time, especially as my hormones gear up for the menopause! This is an unstable condition and hardly surprising that test results fluctuate. As Professor Hughes says, it is the tests failing the patients, not the patients failing the tests. I hope this helps.

Kind Regards Mary F

[Lucky67]

Thanks for the reply ...

Looking at the list of specialists I don't think she is under one ....

I agree with the tests being unreliable ....and I would be insisting on the heparin now...

But then again after losing a baby (thankfully hasn't happened to me) I know I wouldn't want to go against my consultant if I thought he had good reason for my treatment...for not giving me heparin.

I think I'll suggest she looks at the list of specialists and maybe gets advice from them too...

And recommend this site again - is there a special APS in pregnancy bit?