I came off blood thinners with a chronic clot. My clot was still there at the six-month mark, but I came off thinners and had no further issues for another three and a half years, when I reclotted after starting on a new birth control pill. The original clot was still in the vein when they ultrasounded and found the new one.

There are docs who are very conservative and will keep a person on thinners if they have a chronic clot, but I sort of think that's overkill. At six months, the clot should be pretty well stabilized and at no risk of breaking off and traveling to your lungs. I'm not at all convinced that staying on thinners would be helpful at that point.

I came off blood thinners while still having a ton of chronic clotting in my leg. Like it was bad enough that the hospital always had the same tech do my ultrasounds because no one else could tell for certain whether the clots were chronic or newer. My clots were assumed to have been related to pregnancy/delivery, so they thought they knew the cause. To be fair, my doctors actually told me always that they believed I'd clot again at some point because of the vascular damage in that leg, but they hoped it would be decades away from happening and I'd have all that time free from anticoagulants.

The unfortunate thing is, I clotted again exactly two years after being diagnosed with my first clots, but this time it wasn't even my "bad" leg, it was my other leg! So who knows.......I tend to agree that just having some chronic clotting probably isn't enough to have to stay on blood thinners, but just have an honest conversation with your doctor about questions and concerns you have either way. Ultimately it's your decision to make. There is some risk both ways, but for me, when I only had chronic clotting and had a provoked clot (which is I think your situation), I felt that staying on blood thinners was riskier and more limiting to my life than was the risk of another clot. Or rather, I guess I just wanted however many years of freedom I could eke out. Although, I also had an IVC filter, which also afforded me some level of extra "safety net" in case of clotting again.

Anyway, I don't think I'd let a doctor just outright make the decision for me, but I do think it's important to ask questions as to why the doctor recommends one thing or the other and take that into serious consideration, talk together about the pros and cons of each choice. Just make sure that whatever decision you make, do it with your eyes as wide open and well informed as possible, because ultimately you're the person who has to live with the decision and whatever consequences come from that, not your doctor.

I haven't come off yet. The plan for me is to lower my Xarelto dose next month. And then 12 months later if everything still looks good to come off Xarelto completely. The reason I am staying on for two years is because my interventional radiologist's own studies have shown his patients are less likely to reclot if they stay on the blood thinner for 24 months after the last procedure. But since I have tested negative for genetic reasons to clot I shouldn't need a blood thinner for life.

I'm looking forward to coming off. I want to go whitewater rafting in a wilderness area again, and my husband says it is a no go while on a blood thinner. I'm already starting to plan my trip on the Salmon River for 2016. Something to look forward to.

Glad to hear your leg is showing improvement.

jbmc, one thing to remember is that when people come off warfarin per their doc's recommendation, most don't know what the status of their clot is because most docs don't do a follow up ultrasound. They have you do your time on warfarin and then stop. So I'm sure there are tons of people who come off warfarin who have no clots left, residual clotting, etc.

That's a good point, RMB. Most people with residual clots probably come off the warfarin with no idea that there is still clot there, since it is somewhat rare to do a repeat ultrasound when coming off warfarin.

Ultimately, if you have concerns, it is definitely up to you to ask the questions and get answers from your doctor. You can also get a second opinion if you need more input. Any decisions about your health are ultimately up to you.

Thanks for the responses. Aicir, My Hematologist mentioned the same thing to me, that 2 years on Xarelto lowered the chances of another clot. I belive doctors in Europe established this study from my readings. And good points RMB on people going off thinners w/o another scan. I couldn't do that. I want to know what's going on too much. The only good part of my lymphedema consultant (compresison therapist) and Pulmonary Hypertension specialist is they like to monitor my leg. Keeps my anxiety down a good bit. I have yet to be tested for genetic disorders, so I know that will play into the decision as well. All I know is I am hetero two different MTHFR mutations from each parent, but my homocystine levels are normal, so I doubt it was a facor in clotting. Thanks again all for the responses. You always help.

Hi all! I went back and read this thread again, and want to thank you all for your input. So here I am, one year out from my hospital stay. Recently I have had serious ear ringing/pain and headaches. I met with my hematologist, and he has heard of this being a possible side effect from Xarelto. So in a few weeks I am coming off. I still have the residual clot, but we agreed it is stable and blood flow is good. Now I can have the blood tests for clotting disorders and see if my ear issues get better. I know there is always a risk of clotting again if you have chronic clot, but I would love to be off the Xarelto. We were shooting for 18 months before stopping, but neither my Hema or vascular surgeon think it will make much difference. Xarelot has been great, and maybe I will have to reurn to it again, and that's fine. I just need to decide if there is more long term risk on it to my health,or more risk of clotting again with chronic clots. I'm not worried about bleeding, just the unkown affects of being on Xarelto long term. I am running again, and still on 30/40 compression, and hoping to keep gettign better. Thank you all! And if anyone has come off Xarelto with Chronic clot or experienced any ear issues, please let me know!