How can I have more PE's while on Rivaroxaban?

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Hi,

   I spoke to my GP today who told me she had my CT scan's results back,

I asked if she could have a look and was told first that it was great news as my massive saddle pulmonary embolism has gone.

But the scan showed multiple blood clots at the bottom of both my lungs,

I asked how many was there in each lung and was told she couldn't count them all.

I'm not sure if I will still have to see my consultant as it's his specialised field,

 ( so hopefully he would know more)

But I was given  IV thrombolytics at the time when they found the saddle blood clot, I was told to save my life, and that the Rivaroxaban was to get rid of any of the blood clot that was left plus it would stop another clot forming as it thinned my blood.

So please can someone explain to me why have I now got multiple blood clots in both my lungs?

When it was only on the 1st April that they found the Saddle PE and they treated that with  IV thrombolytics and  taking orally Rivaroxaban, which I'm still taking.

Sorry I probably sound stupid as I thought I could not get another one while I was taking Rivaroxaban and also how in such a short time have I got more PE's in both my lungs? 😢

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  • Posted

    Hi Elizabeth, am sorry to hear your news. I too am on Rivaroxiban for life! 1st Feb got my first set of PE in both lungs started on Rivaroxiban discharged from hosp. Two weeks later a further 10 plus a saddle! In hosp for 3 weeks, was very week discharged yet again on Rivaroxiban, 7 weeks later 3 dvt's in left leg. So I can understand your confusion I too also asked how can this keep happening? One dictionary actually told me the truth some people for no reason have this happen, it may happen again it may not. However, she said listen to your body you know it better than anyone if you feel something is wrong go to a&e immediately.

    i know this won't help your anxiety nothing will but I am now 8 months post insult, and it is getting a little easier. You do get weird and wonderful pains that come and go, but trying to be positive abut your recovery is a big help.

    like others I have learned more about what's happened from this forum than the doctors. So remember we're hear when you need someone to talk to. Good luck in your recovery 😃

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    • Posted

      Hi Jacqui,

                         I'm speakless !!

      Just wow,

      how did you cope hun?

      I'm in pieces and this is only the second time,

      I don't understand why they give us Rivaroxaban if we can still get blood clots,

      My GP is really good with my pain levels, as in giving me Morphine and is increasing it as needed but she is brilliant as she comes to my house each week.

      But she doesn't really understand as how can anyone who hasn't felt this pain.

      Before April this year I was ignorant and never even heard of a PE.

      You are so right, this group is such a gift that I was lucky to find as I don't know how I would of coped.

      I really hope you feel better soon and hopefully we find out why some people are more prone to having PE's than others.

      Thank you so much for your advice and kind words🌺

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