Coming off Warfarin after long treatment. Unprovoked PE.

[Chata2007]

I see some discussions on the issue of coming off Warfarin or not. I'm in that cross road now. I was diagnosed with PE, multiple blood clots, 4 years ago. After the required 6 months treatment and after a whole battery of tests, my hematologist then rendered his opinion: my PE was unprovoked so I needed to stay on Warfarin for life. However, a year after that, after I had to relocate, another doctor at a Coumadin clinic didn't think a reason to stay on it. I was scared and I stayed on it. Fast-forward three years and another doctor is trying to convinced me to come off...After 4 years of taking it! I am scared to death and I don't know what to do. I am thinking now I should have come off three years ago...But now? What is your experience? Thanks

[dall05]

I think I would be inclined to stay on the warfarin if its not giving you any problems. Play safe seeing as they didn't know the original cause.

Tony

[Svtcrazy]

Take the test to check your protein c & s. These are genetic tests. If your rates are good and you were never diagnosed with a true hypercoagulation syndrome, then a wean down and we deal checks, you should be okay. BUT make sure those tests are done before you do it.

[SongofSongs]

I had an unprovoked PE over 3 years ago and am still on warfarin. I think that my clot may have been due to a pelvic injury and inflammation, but this has never been confirmed. When I asked about stopping warfarin, the medics do not really know what the risk is - all they can say is that research shows that if you come off blood thinners after an unprovoked blood clot, your risk of recurrence is 30% within 5 years, i.e. about one in three chance.

I have chosen to remain on warfarin for the time being, as it does not give me many problems. However, I did try one of the new anti-coagulants (rivaroxaban) for a while, and that was a disaster for me, though may be a better option for others.

[Jbug66 in reply to SongofSongs]

I'd be interested to hear of your experience of rivaroxaban. Just started on this for lifelong treatment. Tia

[SongofSongs in reply to Jbug66]

I felt very unwell on rivaroxaban (dizziness, lightheadedness, feeling as if I was about to pass out, and also a fluttering sensation in my chest). My dosage was reduced to 15 mg and this was better though still not perfect, but I decided to return to warfarin. I was particularly concerned about the heart palpitations which I had never experienced before, and which stopped (almost) after I ceased taking this drug.

However, I still felt unwell and lightheaded for some time after changing back to warfarin, which culminated in a fainting episode. I am only now (6 months after starting on rivaroxaban) getting back to feeling normal.

Everyone is different, and some people feel better on rivaroxaban than on warfarin, it just didn't suit me. Also there is no research on the effects of long term usage of these new oral anti-coagulants - that is an unknown quantity as yet.

[Jbug66]

I had a conversation with my haematologist this week and he advised that 30-50% of recurrence happened within 3-5 years. I asked whether a relative should still be on anticoagulants after having two spontaneous pe's he said that as both 5-10 years ago he is prob ok as after 5 years the chances of recurrence drops significantly. Discuss the reasons which your docs on why the don't think it's no longer necessary and make your mind from that.

[ChrisPazza62]

I had a spontaneous PE 6 1/2 years ago (aged 48) - a week after skiing accident injuring shoulder/neck (but doctors didn't think they were related) a small recurrence after a week (i.e. probably same clot) and a possible 3rd after a month or two (could have been nothing, but I was ultra-cautious knowing someone who had a massive PE and didn't make it. After 9 months on warfarin, a battery of tests showing heart/ blood/ circulation all o.k. and no underlying issue found, the medical advice was warfarin for life, but I didn't to. After 2nd opinion the advice was still warfarin for life, but he understood why I didn't want to (as I'm very active (squash/cycling/skiing/gardening/diy etc), so often get bruised/cuts etc.), and agreed it was cautious advice to stay on warfarin (i.e. they don't get sued if I have a recurrence). Haven't had an issue since. I am hence very happy with my decision to stop the drugs.

[toronto1951]

I have been taking it for 4 1/2 years after a fib. my dr. wants me stay on it for life. but I haven't had anymore problems with a fib. I am going to stop taking it next month. with or without his ok. my poor legs are so bad from side effects, a lot of vascular problems.

so I am done. I'll just watch my diet and be very careful. good luck to you