Unprovoke DVT/PE need lifelong medication

PE in April 2017 and cause unknown. On Rivaroxaban 20mg for 3 months.

Anyone has this same unprovoke DVT/PE and ask to take lifelong medication ?

Bad concentration taking the medication..

Anyone similar case as me

[moo196]

I had ( have ) unprovoked dvt ( but called cvst as it is in my brain ) in Oct 14. Was on warfarin for 2 years and partially resolved. Unlikely for it to clear completely.

Discussed apixaban and variants but decided these were not as suitable as good old warfarin.

Good luck !!

[wrendarr]

I had a similar experience to yourself.

At 34 I had an undiagnosed DVT in my leg which i then parlayed into 2 PEs, i'm very greedy. I did not present any symptoms until i was at work and couldn't fasten my work boot as my leg was so swollen. From there i worked out that i had developed the DVT whilst flying to Malaysia 6 months earlier i had a very tender leg behind the knee and the company doctor dismissed the pain as muscular. About 3 months later i had a clot travel to my lungs whilst swimming then 3 months after that the PE occurred whilst climbing stairs at work, both time accompanied by shortness of breath and a racing heart, i thought i was getting the cold! I spent 7 nights in hospital in Stavanger and recovered enough to make it home, i had the good fortune to not have suffered any permanent damage caused by the clots. I took LMWH for the first few days then moved to Warfarin and INR testing which was a pain, then finally on to Rivaroxaban, i was luckier than you as i only had to take Rivaroxaban for 6 months and now only need to take medicine if i am flying for more than 3 hours.

What i found very useful and i am sure you will be the same is coming to a site like this and reading accounts of people with similar stories to yourself, i suffered no lasting physical damage but psychologically i felt vulnerable and to come onto ACE and discover that there are many people who have been through the same process as me was very comforting.

[Hidden in reply to wrendarr]

I'm been to Canada 4 months before .. 24hours flight but doc said it's far too long for the cause of dvt to be due to that flight ..

[Jules1712]

I also had unprovoked bilat PE in April. Im on Dabigatran for life. Still gettg shortness of breath on occasion and fatigue but no other obvious problems.

[AlisonClark]

I also had unprovoked bilateral PE in April 2014, been on Warfarin ever since. When I had my 6 month review I was basically told that because they didn't know the cause of the PE and I was overweight that I should carry on taking it! I have now kind of resigned myself to taking it forever, to be honest I'm tired of fighting to get something done. I don't have too many side effects and I have learned to live with the ones I have. I have bought a Coaguchek monitor to do my own INR when I am away and have managed to be reasonably stable so trips to the hospital are every 6-8 weeks

It did take me a long time (a good 12-18 months) to get back to something that resembled "normal". For a long time after I suffered with tiredness and I lost a lot of strength, but it does get better

This forum is a great place to ask question, no matter how stupid you think the question is, there is usually someone with advice

[Hidden in reply to AlisonClark]

Great to hear that.. Some days are good some days are so tired for me.. I simply cannot focus ..I really can't wait to get back to 'normal' me..

[AlisonClark in reply to Hidden]

I know exactly how you are feeling. Just don't expect to feel "normal" overnight

[Hidden in reply to AlisonClark]

Did you ask doc about rivaroxaban as lesser blood test needed

[AlisonClark in reply to Hidden]

No I didn't. Rivaroxaban has its own set of side effects. At least with warfarin there is an antidote should a bleed happen as they can give you vitamin k, I don't think that is the case with rivaroxban but I may be wrong.

I manage it quite well now and have a good anti-coag team at the hospital. I'm at least 6 weeks between appointments at the moment.

[moo196 in reply to AlisonClark]

Yep - there is no antidote for apixaban - that's why I took warfarin.

[Hidden in reply to moo196]

the antidote is in clinical trials at present and is called andexanet alfa.

[Jules1712]

Im on Pradaxa and it now has an antidote

[molly34]

Hello,

6 months ago I was diagnosed with 2 clots in my arteries in my leg and have been told I will need to take warfarin life long. I am 34 years old, don't smoke, drink and I'm not overweight. They are doing more tests as the Drs now think I have a Tumour. I feel tired all the time. I can sleep for 10-12 hours and still feel tired when I wake up. Anyone else get this side effect with warfarin? I also feel the cold much more. Thanks