Hi, I had a pulmonary embolism Sept 2012. Off warfarin now but seem to tick some boxes for Hughes syndrome. Any advice?

[vine55]

[Wenz15]

Hi - I had a PE in 2009 while I was pregnant. I came off Warfarin about 2yrs olds and I have now found out I do have APS (Hughes Syndrome) It took well over 12-18th to get to this point and I have only found out I had it in Feb this year. If I was you I would ask to be tested for it and see a specilist. welcome to this site - it is so helpful!

Wendy

[vine55 in reply to Wenz15]

Thanks - I will. I have had 3 children with no problems - the last 21 years ago. Does this mean that Hughes is unlikely?

Caryl

[SassyOne]

Vine, definitely ask for the tests, it can't hurt but it might save your life. Ask for the Hughes tests & the usual clotting tests (protein S&C, mtfr etc. )

[GinaD]

I had 2 successful pregnancies and my APLS did not show up 2 years after my last child. I was misdiagnosed then,but given warfarin. Then I was taken off warfarin and that's when all h***broke loose, finally got a correct d/x and am doing pretty well, circulatory system wise, on warfarin. So yes, i am a classic example that Hughes can show up after uneventful pregnancies. Our crazy immune systems march to the beats of really bizarre drummers.

Gina

[MaryF Administrator]

Yes do please ask for a referral to your nearest APS specalist, and get reviewed by somebody who knows what they are doing.. You can lose nothing by doing this, only gain, if you see what I mean. Mary F x