PEs

I've had a DVT some years ago and bi lateral PEs nearly two years ago now. It's been a very long haul of feeling terrible , frustrated too at not recovering fast enough for me! I'm usually very active and jolly. This wiped me out to a breathless , slow moving person I didn't / don't want to be. Getting the correct treatment at an NHS hospital was a source of stress , some NHS hospitals and staff should in my opinion not be allowed out near unwell people . After a combination of my partner wheeling me out of said terrible institution and driving me to safety down the MI to a private hospital for 6 days ( PPP) I survived and went on to battle the local NHS afterwards . It's been a total nightmare , but eventually after much persistence I saw a PROPER haematologist to carry on anti goagulation. Not Warfarin , Riveroxaban . Warfarin is cheap for NHS but totally outmoded to most lifestyles . Nothing is perfect though . There are many things many Drs/ consultants don't know too. I rely on my intuition and was taught to be vocal ! I would advise all in the same boat to follow suit. Fatigue is a mayor annoyance for myself, I'm hoping as time passes this will also.

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  • Having tried Rivaroxaban I am back on warfarin (for life) as the former did not agree with me. Everyone is different though, and some will do better on rivaroxaban.

  • Hello I'm on Rivoxaban but have awful leg & muscle pain , can you tell me what side affects you had? I'd like to change x

  • I felt very unwell on rivaroxaban (light headed, spaced out, dizzy, but no muscle pain). I might have been OK on a lower dose, but I went back to warfarin as I feel better on that and am able to keep within therapeutic range on my current dosage.

    Everyone is different though, and some people feel better on rivaroxaban. I personally do not think these new drugs have been around long enough to establish their safety, but one could say the same about any new drug. Also warfarin has an antidote if you need it and the new drugs do not.

  • I do agree. An efficient, experienced haematologist is essential for accurate treatment.

    Do not rely on anyone else. Riveroxaban is easy to use and the fact that that you do not need regular monitoring or diet restrictions does cancel out the expense if needed for the long term

  • Bit late in on this conversation but I'll add my bit anyway..... personally I preferred to stay on warfarin with regular tests - and having discussed the " diet restrictions" we decided this was totally unneccessary - if you have a faily stable diet ( I'm vegetarian so would have a big helping of pretty much ALL of the "banned" things every day) and get a dosage of warfarin right to keep INR within the therapeutic range it's all good. My blood clot was on the brain and we didn't want to experiment with newer drugs for that.

    The tried and tested warfarin is much preferable to me as the newer drugs are not tested fully yet and there are many more complications should one have an accident / need emergency surgery - vit K can be given as warfarin antidote - I heard that there are not those options with Rivoxaban or Apixiban . So personally I chose the warfarin. ......

    Of course I'm not a medic and may not be as up to date as those in the profession.

  • I'm thinking of changing the side affects for me have been horrible xx