Came off Xarelto; was never retested for clotting levels via D-Dimer test. Having symptoms again.

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Hi, I was diagnosed with bilateral pulmonary embolisms in December 2017. The doctors believe it was due to the oral birth control I was on. I was on Xarelto for 6 months and was tested for a lupus anticoagulant disorder, which came back negative. However, I did not have another d-Dimer blood test done to check my clotting levels.. should I have had that done to determine if I still possibly have blood clots? I have been having chest pains again and a fast heart rate. I had chest pains everyday on Xarelto as well including before I was diagnosed.

Should I ask about getting a d-Dimer blood test done again to check my clotting levels? Is it possible to still have blood clots and/or develop new ones within 2 months? I stopped the Xarelto in June.

Thanks,

Grace 

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5 Replies

  • Posted

    I had multiple blood clots in September 2017, I still suffer chest and back pains However this seems to be getting better!! Maybe anxiety but yes you should go back to doctors just for peace of mind 
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  • Posted

    Hi Gracearnold,

    I was diagnosed with clots in the lungs after a hip replacement. I was put on apixaban (eliquis) for 3 months but was so ill with side effects I stopped after a month. The doctor never mentioned being tested later, I did not know there was a blood test. I think you should ask for a test, it is only through this site I have found out about the D-dimer test, I will ask for this myself.

    It can take a long time for some drugs to leave the system, people talk about a half life of drugs but that means nothing. My hubby was on a drug (beta blocker) that the doctor said could still be in his system over 3 months after stopping it.

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  • Posted

    D-dimer tests are not reliable. They can't tell you if you have a blood clot or not. Mine are always high. Residual pain, healing, and anxiety are all common for years after a PE. I'm a year and a half out and still get pain.

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  • Posted

    Yes, off blood thinners you can develope clots again. I tested negative for genetic clotting disorders. Early April I was able to stop the Coumadin. I was on it 6 months. In June i got sick with bronchitis with asthma. My asthma, again, didn't respond to asthma medications well like the first time I developed the PE's. When I was sick my provider ordered labs and I asked if she could add a d-dimer. Thankfully she did. It was elevated and she ordered a stat CT with contrast of my chest. It showed bilateral clots to both lungs. I was off blood thinners less than 3 months. Now I have to be on blood thinners for life. Being off blood thinners we need to be extra vigilant for symptoms of blood clots. If in doubt ask your provider to order a d-dimer. It's not a definitive answer of yes or no you have again but it'll tell if you need further testing.

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  • Posted

    Hi Grace,

    I'd advise you to go for a d-dimer, I've had about 5 since I came off the anticoagulant, and they all came back negative. Do this to also put your mind at ease. Your physician should have taken the test after putting you off the meds. If you can go directly to the lab, get it done.

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