Many people have one clotting event with no known cause or risk and come off anticoagulants. In fact, that's kind of a general protocol, so I think what your hema is telling you is not out of line with conventional practices. I don't think miscarriages alone are indicative of a clotting issue. My mother had 4 miscarriages with no known cause and never had a clot. With that said, even though your dad's PEs were from lupus, that would still be something in the back of my mind, because maybe it means there's something in your genetic make up that makes you prone to clotting. I have no known clotting factors and clotted twice. My brother also clotted after shoulder surgery. So there's something to may be said for our genetics but who really knows since all my tests have come back normal.

I totally get not wanting to rock the boat. But I'd come off of warfarin in a second if it made sense in my situation. I think there are plenty of people here in the same boat as you. And what it comes down to is weighing the risks for yourself, the risk of staying on it and the risk of coming off of it. That's all any of us can do because it's always our choice.

I'm kind of in a similar situation too, although I've actually already had two clotting events. I've been thoroughly checked several times for genetic factors, which has always come back negative, even though I have a pretty strong family history as well as my own. I tend to believe there is an as-yet-unidentified disorder present. I was thrilled to pieces to come off warfarin the first time, but my INR over the course of 9 months never really settled down and stabilized even though I did everything humanly possible to make it work (the current theory is my postpartum hormones were responsible for the fluctuations). The second time I was on coumadin went fine, I had no problems at all except that I disliked that I basically avoided OTC medications when I got a cold and similar stuff because I didn't want to cause any INR issues. I had one doctor who said maybe I should stay on it, another who said I definitely should stay on, and ultimately ended up taking myself off it after a year due to economic issues. My current doctor (I've also moved from one part of the country to another) was worried that I came off, but he ran all my labs again and I still came back clean, so he's okay with me staying off until I clot again.

So like RMB said, it basically comes down to your decision. There isn't really anything I or anyone else can reasonably suggest, you know, just share our experiences. I think the best thing you can do is weigh the REASONABLE pros and cons each way (as opposed to many people who want to just allow senseless anxiety to control their lives), and decide which thing you're most comfortable with yourself. I don't know that I personally would factor in the miscarriages because there can be so many reasons for that besides clotting problems, and I'm sure you've been tested for the ones that are known to contribute to miscarriage. Do you know which conditions you've been tested for? You might want to check that and just make sure. Noticing that you mentioned your father having had lupus and also the blood clots, and his mother had problems with miscarriage too, you might want to be sure you've been checked for APS, which is a different disease than lupus, but a lot of people with lupus suffer from it - it also doesn't have a known direct genetic link but is known to run in families, so there appears to be some sort of genetic predisposition to the condition (similiar to how lupus is too). There are also multiple testing methods for that condition, so you may just want to double check with the hematologist about that and make sure that's been thoroughly explored (which I imagine he has, just better to check than not know).

Just let what you ultimately decide be your decision, because you are the one who has to deal with whatever consequences come from it. I always figure it's the worst of being stuck between a rock and a hard place, because I figure if I go off, I'll probably clot again, and if I stay on I'll probably be in a car wreck or something at some time and have a bleeding issue. Neither decision is without risk so we just have to figure out what works best for each of us. I know one benefit to having been through the clots is that I very quickly recognized the pain from my second clot, my doctor took me seriously immediately and it got diagnosed very quickly without all the runaround and snowballing into a PE of my first clots.