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Anticoagulation UK
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Rivaroxaban for bilateral PE advice!

In early August I was diagnosed with a bilateral PE, supposedly due to the contraceptive pill. Since then I’ve had a leg ultra sound which showed nothing, and follow up scan due to increased lung pain. The scan showed that the tiny clot on the right lung had gone. however the one on the left hadn’t changed at all. Now 3 weeks after the scan, I’m meant to stop Rivaroxaban in 2 days as my 3 month course is finished.

I’m very worried the left lung clot hasn’t dispersed yet as it hadn’t changed at all just 3 weeks ago. I’m still getting a lot of lung and leg pain. I told this to my GP today and asked if it was possible to have a follow up scan to check the clots were gone and if there was a blood test that could be done to determine genetic factors.

He said I was just being anxious, due to me having anxiety and that “No amount of reassurance will help you”. I feel like he completely missed the point of what I was saying, I’m still in pain and dont want to have to go through the whole ordeal again just because he wouldn’t scan me/test me, as it it took an immense toll mentally and emotionally. He said he can refer me to a specialist.

What should I do? Any advice would be greatly appreciated.

4 Replies
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Please see previous reply about sticky blood

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Thank you for replying! I’ll mention this provided we see a specialist.

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I totally understand what your going through. I have only had one pe in Augusta and my last pill is today. I keep getting weird leg pain and although they did scan my leg, there was no trace of blood clot. I keep getting chest pain if I sleep in a wrong position or do too much but my doctor didn’t even test my blood or X-ray my chest again at all. My follow up is next week to see how I’m doing without blood thinners and honestly I’m afraid to end up in the er again! I would say go to a specialist good luck!

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The specialist says the same thing as the internist. They are reluctant to even give ultrasounds even if you are scared there is another pe. I have asked to have my lungs scanned and they say I don't need it. I have no idea if the blood clot is gone in my lungs. The doctor said I have to take Eliquis for life.

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