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.
I just stopped taking Xarelto about a week ago after 6 months of being on it (I had a moderate PE in both lungs back in July 2014). I was feeling very good the last two months or so, able to take long walks at a fast pace just like I did before the PE, and just felt very strong again. I even had another CT scan of my lungs a couple weeks ago and it came out completely negative for any signs of any clots in my lungs! Well, I felt pretty good the first two days after stopping Xarelto, but then the last several days I just don't 'feel right' and I'm not sure what it is. I just feel a little out of it and kind of tired and like my heart is working harder than before. I am definitely experiencing some anxiety about being off of the medication (as I figured I probably would), I think it was a bit of a security blanket for me knowing my chances of clotting again while on Xarelto were pretty slim. But, just as before, I'm having a hard time telling if what I'm feeling is just the anxiety or if this is something normal to feel physically after going off of blood thinners after 6 months. I keep wondering if maybe my body has to get used to this new blood consistency I have without the blood thinners?? And I can't find any information at all on the internet about it. Oh, and by the way, my docs are almost 100% sure that the cause of my clot was birth control, i don't have any other indicators for what could have caused it (no family history, no genetic blood defects), and I've also been off of BC for the last 6 months and don't ever plan to go back on it!
I was just wondering if others experienced this feeling after going off of the blood thinners? Is it normal and is it most likely just a psychological thing? or is there possibly a physiological factor to it and it just takes a while for your body to get used to this change? Of course, neither of my doctors said anything about a transition period or what i might experience so I just assumed that I wouldn't feel any different after going off of the meds. Any shared experiences anyone else might have had with this sort of thing would be helpful to hear. But I'm also probably going to go back and see my cardiologist soon and let him know how I've been feeling. I am just afraid he'll want me to go back on Xarelto and I am trying to avoid having to do that. I just don't like the idea of taking that every day unless, of course, I absolutely have to.
I was just wondering if others experienced this feeling after going off of the blood thinners? Is it normal and is it most likely just a psychological thing? or is there possibly a physiological factor to it and it just takes a while for your body to get used to this change? Of course, neither of my doctors said anything about a transition period or what i might experience so I just assumed that I wouldn't feel any different after going off of the meds. Any shared experiences anyone else might have had with this sort of thing would be helpful to hear. But I'm also probably going to go back and see my cardiologist soon and let him know how I've been feeling. I am just afraid he'll want me to go back on Xarelto and I am trying to avoid having to do that. I just don't like the idea of taking that every day unless, of course, I absolutely have to.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I'm returning to my Hematologist soon for the result of an extensive blood test taken while off Xarelto and will discuss my symptoms with him at that time. Today, day 9 off Xarelto, I'm beginning to feel a little better.
Best to you.
I took Xarelto first then changed to warfarin. Being anemic I had many blood tests. The size of my RBC were all over the place some large and some small. Even though anemia was the larger cause of it I was told by my Dr that warfarin (blood thinners) also affect the size of your RBC. It has to do with hemoglobin and oxygen exchange and the cytoplasm in your blood cells.
It took 6 months for my iron to increase after blood loss and my cells are still not 100% normal. Your body will produce more red blood cells to compensate over the healing process. If you think of your RBC as a natural time clock for your body that delivers oxygen it is easier to understand how tired you feel with any changed. It will take time to even out. Consult your Dr with any symptoms.
I received the results of my lab work and everything is within normal range. Prior to starting xarelto, my haemoglobin was low so I was slightly anemic but I took iron supplements for 3 months and my levels are normal according to my blood work.
I suspect xarelto has another set of side effects upon getting off, I wish they documented that. I feel like I’m walking without a map.