Is it possible to only test positive for APS in pregnancy?

[Esmes2013]

I tested positive for APS on the first blood test, this was whilst I was pregnant. The pregnancy resulted in another miscarriage and I then had a second blood test, when I was not pregnant, which showed negative for APS. Is it possible I could just be APS positive in pregnancy? I have now had 5 early recurrent miscarriages since March 2015 to Nov 2015 so I have no issue conceiving but they have all been lost extremely early, under 7 weeks. My last appointment, a registrar told me it was my age, I am 40.....is that it? I have been given clexane, aspirin and progesterone to try with a future pregnancy but not sure if its even worth trying! Just wondered if anyone had heard of APS only in pregnancy? Thanks

[MaryF Administrator]

Hi, in answer to your question, no, Hughes Syndrome/APS does not go away, however for some people it appears to cause real problems in pregnancy, only to behave itself a bit better outside of pregnancy. However I must state clearly here, that Hughes Syndrome/APS is an unstable condition and somebody's personal situation can change. It is crucial you have a consultant guiding you and your GP, that is fully up to speed with this disease. Our charity carries a list of specialists, ones we recommend across the UK, if you are not in the UK, I/we will still endeavour to help you. Where ar you located?

It is also possible to go in and out of negative/positive testing results.

hughes-syndrome.org/self-he...

The guidance that you have been given for a future pregnancy is correct, they are on the right track. We have many women on this site who have had multiple losses and then gone on to have a successful pregnancy, with the right care, and monitoring throughout. Sorry you have had such a difficult path to diagnosis, you are not alone with this.

hughes-syndrome.org/

MaryF

[Esmes2013 in reply to MaryF]

Thanks Mary, I was a little confused with it all ! I have been told I do not have APS / Hughes following the fact one of my tests was negative so I am not sure how I would get help or advice from a Hughes specialist ? I am based near Manchester so would travel to see someone if I could try to get to the bottom of it before many more losses? Thanks again

[MaryF Administrator in reply to Esmes2013]

Make sure you tell your GP in no uncertain terms that you have had previous positive tests and your actual medical history, take your most trusted friend, colleague, relative or neighbour to be your patient advocate if things feel to tough! Hang on in there. MaryF

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I read somewhere that it is a good idea to start using blood thinners before you try and get pregnant because blood clots can already be formed before you get pregnant. That might give you a better chance at carrying your pregnancy to term the next time you try. I also agree with everything Mary has told you. The disease never goes away. It is always there.

J.

[linagirl]

But I did hear that other things can cause LA results to be positive like a virus and some antibiotics and then another test can be clear which is why they find diagnosis so hard. Is this right?

[Esmes2013 in reply to linagirl]

Hi yes I have heard that as well, all I know for my personal situation is I have not taken antibiotics for many years and I was "well" during both tests although I appreciate I may have had a slight virus that I was unaware of at the time