2nd PE

[Tr1cky]

Hello. I had a unprovoked PE in 2015 which was a frightening and life changing experience. I was put on rivaroxaban for 6 months. After a couple of year's my anxiety and life got back to more or less normal and living an active life.

Well that has just all changed! I just had another Unprovoked PE and have been put on rivaroxaban for life.(in and out of hospital like yoyo due to the NHS crisis) Not quite sure if it's really hit me yet with what's happened but it's slowly sinking in. Has it happened to anybody else?

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[Jerry99]

yes. PE & DVT 2008. Came off wafarin after 6 , recurrence of PE & DVT 2009. Lifelong anticoagulants. Switched to rivoraxaban 2014. Several post DVT symptoms in legs & persistent shortness of breath, but so far still here...

[Seraphine2021]

hi,

Pretty much the same thing happened to me and it is scary. I too am on Xarelto for life now after a second PE but there is always the fear that it is not enough. The important thing is to press for genetic tests to find out what has caused you to have these serious clots, which might prove tricky in the UK. I live in France so the health system is more accessible but even I missed out on this testing after my last PE because it was lost in translation when I was in hospital and once you are on the anticoagulent medication, they cannot test you without taking you off it again for a period of time. There are a number of things though that can cause this type of unprovoked clotting and treatment may be different for different causes. Some people have a clotting gene problem which causes them to clot more than most people. There is also ‘sticky blood syndrome’ which causes you to clot more easily because your blood is naturally thicker. There may be other reasons as they are discovering things all the time so it is important to find out what your particular problem is so that the right treatment can be identified. I have to wait now until I am stable enough to come off the Xarelto for long enough to have the tests done but I am going to push for it so that I know that I am on the most effective medication for my clotting problem. I think that only this would bring me the most confidence. I hope that you can get this done too and wish you luck in the UK but if you can afford to, I would even go private if necessary as I am sure that the NHS will try to fob you off otherwise. Good luck.

[lcfcpolo]

Hi. It is good that you are on the Rivaroxaban. I had recurrent DVTs and am on Apixaban for life. It is important to try to get to the bottom of what caused the 2nd unprovoked DVT. Please make sure the hospital has completed a PSA check on your bloods for possible prostate cancer. Very unlikely but you need to rule everything out.