Sticky Blood-Hughes Syndrome Support
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PE and APS on Warfarin

So I am 27 and I had bilateral PE in 2013. At the time I was on combination birth control, had driven four hours one-way and back (so 8 hours) and taken a trip to DC by plane. At the time of the PE's I was placed on Warfarin and had to decrease my exertion. Only on Warfarin for 3 months. I also had all of the anti-coagulation testing done with nothing else mentioned about them. I decided to see a hematologist for information about pregnancy due to the thought is was hormone based and a 2nd opinion on the situation. He at this time almost 2 years later tested me again. Because he found abnormal results from my original testing. He suggested I start warfarin again and continue lifelong.

Now I am wondering if since I have only had one clotting experience if I should be on lifelong therapy.

3 Replies

Welcome to this very informative site. There is a wealth of information on here and experienced Admin to answer your questions.

If you are definitely +ve for APS then why are you hesitating? You are 'lucky' to have been diagnosed this early before you may have an incapacitating stroke! There is a link to the HS website pinned to the right of this page-have a look and gather some info about this condition.

1 like

Hi there and welcome to our friendly forum.

It is good that you have been given a swift diagnosis.

Please have a look at our charity's website, which has a lot of information:

A couple of questions:

Where are you from?

Who is managing your APS?

You need to be under the care of a consultant experienced in APS and a list of them in the UK may be found here:

Best wishes.



Hi, thank goodness you have a medical expert on your case, you need to be monitored regularly and it is good that you have been advised to stay on anticoagulation, welcome by the way.     MaryF


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