Could I have APS

[Redheadchik]

I am on warfarin for pulmonary embolisms in both lungs coming from a large clot in my groin, which is still there. When I went to the ER, they said I had sticky blood. The doctor said there was no such thing. Then I ran into this message board. I had genetic testing, but I wasn't taken off of warfarin. Should I have been taken off of warfarin for the testing, or did it matter?

[Manofmendip]

Hi and welcome to our friendly forum.

We are not medically trained on here, so we are unable to answer the specific point that you have raised.

Have you been given blood tests for APS/Hughes Syndrome?

Where are you from, as this will help us and our members to help you.

Best wishes

Dave

[Lure2]

Hi and welcome to our friendly site!

I do not know if they had the time to test you for all the three antibodies we test for to get a diagnose, before you were put on Warfarin.

First of all if you have got HS/APS you should absolutely not stop Warfarin which thinns your blood.

If they took the tests before they put you on Warfarin you can not today take the third test for HS/APS and that is Lupus Anticoagulant (LA). The other two, Anticardiolipin antibodies (aCL) and Anti-beta2-glycoprotein-1 (anti-B2GP1) you can always take as they do not interfere with the Warfarin.

This illness is also called "Sticky Blood" or "Hughes Syndrome" (from the Gentleman Prof. Graham Hughes who discovered it in 1983) or "Antiphospholipid-Syndrome."

Hope I helped you a little! Please stay with us here as you will learn a lot from our knowledable and friendly members.

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Hello and welcome, Sticky Blood is indeed Hughes Syndrome/APS, unfortunately across the world some medical teams and individuals still do not have the most basic knowledge or indeed the detail regarding this disease. There are three tests to be done, and only one is altered by being on Warfarin which is the one for Lupus Anticoagulant. It is crucial that you find a specialist who understands this condition, stating the area where you live will help members on here guide you towards trusted help. We are not medically trained, and an good doctor would not think of stopping your Warfarin with your past medical history and current diagnosis for Sticky Blood which is Hughes Syndrome/APS.

MaryF

[CormorantWatcher]

I was recently told by a haematologist that many in her own profession don't understand APS yet and it is possible that my earlier tests (2008) that diagnosed me with APS did not take into account my Anti-coagulent (warfarin at the time). You can be tested on warfarin, but they need to know what to look out for in the results and which results could be false representations. They should also run 2 tests, 3 months apart.