My hematologist mentioned at my 3 week follow up on Friday that he may recommend it for life for me as well. We think it was a perfect storm of events for me - being sick/dehydrated/in bed on vacation followed by the 5 hour drive home. His concern is the size of the clot I had for relatively innocent circumstances meaning I wasn't totally immobile, I got out of bed to run to the bathroom and we did stop 3 times on the drive but I didn't do much more than get out of the car since I still wasn't feeling great. My largest clot was 19 mm x 15 mm (huge!) so I see what he's saying. Even so, I'm not wild about the idea. We'll revisit it after my follow up in December.

Did they give you any reason for their suggestion?

Indy my PE was idopathc too and was put on Xarelto....told I would need to be on for life..I was on for 11 months and decided to take myself off...I was feeling bad and my hair was coming out. I took what they said and did my own research and made a decision that I felt was right for me...I have no clotting disorders or risk factors so I will take my chances...
Hope you can find a doc that will work with you..the alternative anticoagulants are not cheap either.

Usual is 6 months, but I suppose if a recurrence is significantly more likely (family factors) or the effect of a recurrence could be more severe (apart from the obvious), there may be a case for staying on for life. As with the 1st reply, was there any explanation for their decision?

My first set in Nov 2012 were massive and idiopathic and 3 of the guys I saw after said I'd probably be on it for life, the 4th guy was the one I saw at 6 months and he said to come off then. I was no different, it seemed to simply be a different expert opinion.

Hi Indy, I had a massive PE in March 2014 and at the time I was told I'd be on warfarin for 6 months or for life. PE was idiopathic.
I've been following what you've been posting to others because I'm being treated through the NHS also and it's gave me some idea to what I can expect in my 3rd (and final) review at the end of September.
The doctor mentioned Xarelto at my last review (July) and I'm now convinced that I'm going to be on anticoag for life but hopefully not warfarin.

Hi Indy, I just had my second round of Pe's. 5 the first time after surgery but this time there was no reason for it and I have been told that I will be on Coumadin for life. My body hates Coumadin but at least it is reversible with vitamin K injection if I happen to have a bleed or am in an accident. The others so far are not reversible you just have to wait. (I have decided this time that I am eating my vegies and the Coumadin will just have to be adjusted as needed) My life is saved due to a blood test called D-dimer, I had no symptoms with this PE and if it wasn't for having that test I would not have know so early. If you aren't wanting to stay on the meds and believe me I understand I would demand routing D-dimer tests for yourself just in case. Good luck!

Hey everyone. Thanks for your replies.

My risk factors mentioned during the consultations were simply being male, relatively young at 26 and of Indian background.

However, further testing has just revealed I have antiphilospid syndrome / hughes syndrome after two positive tests! Explains (I hope) why I have been feeling sooooo bad sometimes.The NHS is tending more towards Rivaroxaban for life timers as I have just been switched on to it.

Indy

Don't know about Indian background, but being male raises the recurrence risks a bit (for unknown causes). In some ways, being young is a good reason to get off if you can.

However, APS generally requires lifetime anti coag treatment so it sounds like there is a reason for your clots.