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Experiences of coming off Rivaroxavan

Posted , 6 users are following.

don49008
don49008

I have been on this drug for 5 months and am seeing the consultant for a review in 2 weeks time.

Does anyone on here feel like sharing their experiences of coming off it please?

Thank you

Don

1 like, 10 replies

10 Replies

  • SamP23
    SamP23 don49008

    Posted

    Hi Don

    I was on Rivaroxaban for the required 6 months due to having multiple bi lateral PE last September. As the medics had no idea why I got them I had every test under the sun which still shed no light. My consultant said I fell into the lowest of the low categories for the to reoccur so I could come off them if I wanted to. After discussing things through with family in came off the tablets early April.

    It was very simple as long as your consultant is happy you take your last tablet and that is that. Apparently your blood revert back within 24 hours and starts clotting again. I had no side effects at all.

    However I would really think about whether you want to take the risk..... I am sadly back on the anticoagulants again since end July as I now have a large PE on my right lung and multiple little ones on both.... so good for being lowest of the low risk category. Therefore I am now a lifer.

    But as I said there were no problems coming off them in the first place.

    Good luck

    Sam

    • puzzeld
      puzzeld SamP23

      Posted

      I am exactly the same as you they do not know what caused the PE I also had a chest infection was not given the choice to stop Xarelto was told to stop the on 1/1/2017 and wait to see if it returns and go to casualty They told me I had lots of different symptoms I only felt a slight shortness of breath which got better after two days on oxygen.Surely taking us off the Xarelto  could be risky if the clot goes to another part of our body.
  • -.a-way_forward
    -.a-way_forward don49008

    Posted

    Hi don49008,

    You've got to explain as best you can in as much evidence based detail, the reason why you were put on drug rivaroxyban in the first place, and also what changes or events were happening (if any) in your life, lifestyle preceding and during prescribed anticoagulation. ie work, physical activity or dietary habits.

  • christie2610
    christie2610 don49008

    Posted

    hi Don i too have been on rivaroxaban for 5 months i saw haematologist friday and talked her into taking me off this in a month, the side effects are bad reflux bleeding and sore up my nose, think it was HRT that caused my clot so risk is low now i am off it. after reading about sam and others that have had recurring clots i am a bit scared
    • don49008
      don49008 christie2610

      Posted

      Thanks for sharing Christie.

      I share your concerns and wish you the best of luck.

      I see my Consultant in 10 days time and am also a bit worried about what seems to be a very big decision.

      I wish you well.

      Don

  • SamP23
    SamP23 don49008

    Posted

    With hindsight I wish I had stayed on my tablets for 12 months and then come off them. That was my initial thoughts but family said due to what my consultant said about being a low risk I decided to come off them after 6. Obviously getting the recurrent PEs was unfortunate for me but as we all knowant we're all different so it doesn't mean that the same will happen to any of you. My Ddimer was back down to below 200 in January and I came off the tablets in April. I just call myself unfortunate but lucky as we all are to still be here.

    My only advice is do what you want not what everyone else thinks is best for you. We are the ones who have/are unlucky to have this problem and we are the ones that have to pop a pill. If you feel for peace of mind that it's easier to stay on the tablets then do it.

    Sam xx

    • don49008
      don49008 SamP23

      Posted

      Must admit I am thinking of talking to the Consultant and asking him what he thinks about dropping from 20mg to 10mg for, say, three months and then only taking every other day after that for perhaps another month or so.

      Comments anyone?

    • SamP23
      SamP23 don49008

      Posted

      I didn't know you could get a lower dose. It would be interesting to know. Good luck and let us know what you decide.

      Sam x

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