Sticky Blood-Hughes Syndrome Support

Pulmonary Hypertension

Hi. I'm Roberto from Spain. I was diagnosed with primary APS in 2001 after a massive pulmonary embolism. In 2011 I was diagnosed with Primary or Idiopathic Pulmonary Hypertension.

I would like to meet other people with this condition in the context of Lupus or APS. And the crucial question: Is your pulmonary hypertension diagnosed as primary or idiopathic ( unknown cause ) or chronic thromboembolic pulmonary hypertension ( visible clots in CT scans ). My docs don't see any thrombus in the CT scans but I suspect I suffered another PE in 2011. I'm on warfarin, and taladafil ( cialis ) for the PAH. And my tests are negative!!!!. But after visit Dr Kamastha this is cause I'm on coumadin and there are less odds to be posistive.

I love this community and thanks for your support and information.

2 Replies

Hi Roberto and welcome.

There are several people on her from Spain, so I hope that you connect with them.

Glad you like this forum.

Best regards.




I have Pulmonary Hypertension which started with very high uncontrolled blood pressure. I have APS and all the antibodies in high titres. After warfarin the high bloodpressure has calmed down to normal pressure. I had the last time 45 in PA pressure. I take long walks without any signs what so ever. I can climb stairs etc.

They have not found anything on MRI but I have every year an Echocardiography and it shows 2 leaking heartvalves (tricuspidalisunsuff and mitralis insuff) and diastolic dysfunction.

The PA pressure has stabilized or even been reduced after warfarin soon 3 years ago.

I would also like to see someone with this symptoms. I live in Sweden so you can not meet me. You are welcome to tell me more if you like and I can perhaps tell you a little more.

Kerstin in Stockholm

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