Something will get us all eventually. I think you need to reflect on how much anxiety will affect you if you decide to come off. Personally I would stop these medications in your situation and possibly do a couple of months on warfarin instead before dropping them completely. But I am very comfortable with risk, super low anxiety and have a strong preference for quality of life over quantity. Your preferences may differ. I think either choice would be reasonable but I would at a minimum switch to warfarin if I were going to stay on. Humans are pretty bad at judging risk, your doctor will have seen the people who came off then clotted again but the people who were fine never come back so your doc's perception will be skewed to the negative end.

I know I'm a little late to this discussion! Have you tried baby aspirin? (or talked to your doctor about it?) I was on Rx anticoagulants for a few years and then switched to baby aspirin, which is still effective, but the bleeding risk is much smaller.

My PEs were caused by hormonal contraceptives (with no genetic factors or other risks), but my hematologist wants to keep me on baby aspirin forever. The anxiety of potential bleeding got to me before I was on baby aspirin, but I hardly think about it anymore. I think I'd feel really anxious about going off of anticoagulants entirely, too.

Hope you're doing well.

I did discuss the asprin option, but my doctor didn't seem to feel it was a good option for me, at least at this point. I switched back to Eliquis 2.5 mg twice a day and so far after a little over 2 weeks I haven't had a reoccurrence of the stomach issues. I am making sure I take the pills with a full meal now. I have also spread out my other prescriptions over the day rather than taking them all at once. Drinking more water than coffee now and trying to get my exercising going again. Seems my doctors feel that most of my ongoing chest pains and periodic breathing issues are more stress related over this whole ordeal. In some respects I agree, this whole process has really been difficult for me to get my mind around. My situation is a little different in that my original symptoms were so much more mild than a lot of the other people's I have read. Like you mentioned, I have really struggled with the concept of staying on these thinners for the rest of my life. But I am trying to focus on being positive and more thankful that maybe these will help me avoid a larger more problematic clot in the future. But still being an active guy, the bleeding issue with thinners is always in the back of my mind and I have struggled with that. But after this experience, I worry I would struggle with not being on the thinners and worrying about another clot, kind of a rock and a hard place now as far as that goes. The conflicting reads on my original scan have really made accepting this diagnosis difficult. But I figure if I use this to motivate me to enjoy the time I have more then maybe something good can come of this. But truth is that it is difficult to stay positive every day and I miss not having this weighing on my mind. But with time, I am anticipating I will learn to accept it more. It is still tough to accept that I tested negative for all the possible causes and illnesses, which I would think would be a good thing, but the response to that is to be on thinners the rest of your life since they can't determine why I had these very small clots. I am trying to take it in stages though. As of now I am just working on making it to my next appointment and I'll go from there. Overall I am going in the right direction, I hope.

Thanks, it really helps. How long have you been just on baby asprin? And your doctor felt that was sufficient?

Glad to hear you're doing better all around. Excellent!

I am glad you're going in the right direction! Everything you're explaining makes total sense to me.

I've been on baby aspirin for a little under two years now. And yes, my doctor felt that was sufficient. My labs look normal at each visit (every 6 months), and I feel at peace with it.