Here's some info from ClotConnect on warfarin duration:
http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-%E2%80%9Cblood-thinners%E2%80%9D/

Danielle,

General consensus amongst blood clot experts both nationally and internationally is covered in the following article:

http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-%e2%80%9cblood-thinners%e2%80%9d/

As you can see in the article, the decision boils down to family history, patient history, associated risk factors (medical conditions, clotting disorders), and location and size of clot.

Though the above article discusses general guidance, physicians may decide a course of treatment that they feel comfortable with or based on input by the patient. Always best to get a second opinion in such case by seeing a blood clot specialist. Dero from this forum and the DVT forum has been involved with some of the researchers up in Canada and may be a helpful resource in finding a specialist up your way.

R/Tom

Rachelle, you beat me to it as I was typing my reply :-)

I'm the fasted right mouse click copier and paster in 3 counties.

You guys make me laugh. :D

I also had a massive unprovoked PE and was prescribed long term warfarin therapy and then on medical review after a year my doctor suggested the choice was mine whether to stay on Warfarin or not. My general health is okay but I was nervous of letting go of the "crutch" of warfarin and chose to remain on ongoing treatment. It is now 7 years on and I am still on warfarin and monthly INR checks but have now reached a decision to stop warfarin therapy and live life drug free. I am not on any other meds. I guess I am saying that once the medical professionals and especially YOU are in agreement that you no longer need warfarin therapy then make your own choice, and the one that you are happy with. You shouldn't feel pressured to stop OR continue. It has to be from you. I wish you good luck and health.

Thank you, Hplus: that's exactly how I see it. I don't particularly relish being on Coumadins, but am even more scared of having another PE: just don't want to put myself and my family through that again. I know the risks of PEs, as my dad died from a PE.

I'm pretty sure the research will tell you that once you have had an unprovoked PE you are likely to have another one and the second one is more likely to be more damaging. When my doctors and I have talked we discuss the pros and cons of risk of clotting again vs. risk of another PE. If your dad died of a PE I would think you would also be advised to spend your life on coumadin, like it or not. I hate it. But both my hematologist and pulmonologist, and my internist agree I should. When there is no reason for it to happen the first time there is no reason for it to not happen again.

Thanks for the input, that's how I feel too: Since we don't know why I clotted, and the clots were so massive, I don't think I need to take any chances with my life. I'd rather be on Coumadins for the rest of my life, and to have a life, rather than come off the meds, and then, see my life shortened considerably.

I am also puzzling over this one. Had a massive PE (collapsed and was taken to hospital) two years ago. I have been on sinthrome ever since. However, I've seen a haematologist and pulmanologist and had all the tests and they have decided that they want me off the medication. However, like you, my dad died from a PE and I have had lots of miscarriages so I am very worried that if I come off the medication I will have another one which will be very serious. I have been so anxious about this since my PE I have developed extreme IBS...It's not easy, is it?

It is not easy at all. So your PE was unprovoked mewshep? I had miscarriages too and all the genetic testing for blood disorders were all negative. So I am one of the people with an unnamed clotting disorder. Both my parents clotted and now I suppose I need to watch my kids and have them be careful in life not knowing for sure if it is genetic and they wouldn't test positive either if they clotted.

Danielle, your story is similar to mine. My PE was unprovoked. I was fit and fine at the time. After PE and then after 6 months on Warfarin / Coumadin I stopped taking it and then had loads of blood tests (just trying to find a cause). Since then, I discovered I'm Factor V Leiden Homozygote and hence back on Warfarin for life :-( However, so much better to be on Warfarin than to have another PE. As others have written here, you can still have a great life on Warfarin. I'm just more careful about taking risks (e.g. no more black runs skiing) but you can still do stuff (I still cycle and ski).

I'm more comfortable in my head about being on Warfarin - I'm not constantly worrying about getting another clot - indeed I can go for days without worrying now. For me, this peace of mind is worth lots, so, until there's a better treatment, I'll probably keep on taking the Warfarin and so keep on enjoying life.

I had my PEs in Sep 2011, I'm now 17 months post PE and my lung function is back to where it used to be pre-PE, I know this since I know my best times for running and rowing and I'm once again at this level. It takes time to heal, but you can, and you will, so good luck and best wishes. Andrew.

Factor V Leiden is a definite possibility for me as one of my father's cousin and her daughter both were diagnosed with it. This is a close cousin, as my grandfather and her father were brothers and my grandmother and her mother were sisters. The internist said it wasn't close enough to be a risk factor, but I don't believe it. And my father did clot and so did his sister. Don't know about other uncles and aunt, as we aren't close enough, but wouldn't be surprise of a history there.

It's hard for me to know about genetic risks, as my mom is an only child and my dad only had 5 brothers and sisters. And I'm the oldest, so likely the first in the family to experience stuff.

I also worry about clotting disorders, as there is a VERY strong history of strokes in my family: 3 grandparents out of 4 had strokes. And, on my mother's side of the family, they both had repeat strokes and both died from a stroke.

I also would rather be on Warfarin than have to worry about clotting. I'm 4 months out, and every little pain in my lungs or my legs has me freaking out! I can't imagine how it would be living with the fear of having another PE, since I almost died last September.

Can you get yourself tested for FVL?
(I'm lucky in that through my work I have health insurance and it was a private consultant who arranged for all the blood tests, I've no idea what they cost etc. But although I didn't like the news, I'm grateful for knowing it. If you can get your blood tested for FVL and the many other possibilities then I suggest it would be worth while - FVL is inherited and so with your family history it certainly seems worth ruling on or out).
Best wishes.

I'm in Canada, where we have provincial health care, so cost isn't an issue. I will be tested once I have an appointment with an hematologist, that and other genetic tests.

I want to know about any genetic clotting disorder, for the sake of my siblings, my children and my niece and nephew.