Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Unprovoked Pulmonary Emboli/long term treatment

MarkWC
MarkWC

Hey all, looking for info/advice. I'm about a year out from an unprovoked PE episode. Lots of little clots in both lungs. Getting answers from doctors is pretty well useless. I'm beginnig to think I know more about this than they do. Either that or they just don't care beyond me bleeding or having another clot.


Anyway, what's the typical long term treatment for unprovoked clots? Should I expect to stay on thinners indefinitely? If not, what's the time table? Like I said, I'm a year in and the docs seem to have no intention of taking me off the thinners anytime soon. I can't stand this stuff. Makes me feel like crap. I started on xarelto, switched to eliquis, then back to xarelto, and now I'm giving pradaxa a try. 


Thanks for any input. Blows my mind that the docs act oblivious to all this.

rmb
rmb
Depending on the medical protocol used by your doctor , I’ve seen it anywhere from 6 months to indefinitely. When in doubt, get a second or third opinion,
mtd
mtd
I agree with a second opinion. What does unprovoked mean? That they happened spontaneously with no under lying cause? If so, it defies logic. There is always a reason why something goes wrong.
rmb
rmb
“Unprovoked” is the technical term for a clot when there is no known or identifiable cause that can be identified through genetic tests, risk factors, etc for the clot. It happens.
notsopatient
notsopatient
A year is a long time for a single event unless there's something else going on. Maybe ask them why they are continuing the therapy and when it will end. You can also go old school with warfarin, although it does need regular blood testing to make sure the dose is right.
rmb
rmb
I think too what we forget is the doctor is making a recommendation, not a mandate, so it’s really a choice to stay on the meds or not. I would ask your doctor to give you a risk assessment as to the chances for another clot if you go off anticoagulants. Don’t quote me on this but I think I read somewhere that the risk of getting a second clot after having an unprovoked clot is 30% over the next ten years. Now whether that applies to you I don’t know.

I don’t recall if you’ve ever seen a hematologist but it might be worth just asking the direct question about your risks for a future clotting event. It seems that may be the most reasonable approach, so you can make an informed choice.

I don’t think it’s that doctors don’t care. I think the issue is there is a lot that is still being learned about blood clotting and risks and testing. So many people don’t survive having a PE so in my mind doctors don’t always have definitive answers for survivors because it’s not something most doctors deal with all the time, unlike diabetes or bronchitis.
MarkWC
MarkWC
Thanks for all the replies. I am currently on my second hematologist. So far they've been non-committal. The one now is more eager to listen, that's why I switched to him. I'll quiz him a bit more about the long term.
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