So Confused

I had DVT and PE in both lungs and also had an IVC filter in place. That was eight years ago I am still on coumadin. The doctor stated that because they didn't know what was the cause of my condition that they feel is the lifetime coumadin therapy is warranted. However now I am considering coming off of the Coumadin because of the studies that I'm seeing for the long-term effects of Coumadin therapy. I am not getting the warm and fuzzy from my doctor for me to come off of Coumadin. I'm just wondering if this would be a good idea knowing the potential side effects as well as knowing the potential side effects of staying on coumadin I'm just so confused right now any suggestions or any ideas of which way I should go?

5 Replies

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  • Don't come off Coumadin without talking to your Doctor, infact it would be very dangerous, their is new anticoagulant medication this may be worth discussing.

    I have my own coagucheck machine so I can keep a check on my own INR it's expensive and the doctors have to agree, you will have to pay for the machine the test strips you can get on Prescriscripion hopefully

  • Clearly this is a personal decision. Having said that I have a similar background with both a DVT and PE 10 years ago and a surface clot 2 years ago. Tests indicated Factor 5 Leiden, which means , with me, an hereditary trait. So lifestyle has nothing to do with clotting for me. Statistics show a clear increase in potential clots for those who have had a previous clot as well as an increase in potential PE. Note that the clot breaking up and moving to the brain or heart is life threatening. I have seen no indication of long term effects of coumadin on my health and have universal support from specialists in this area of medicine to be on coumadin for life. Unlike newer and more expensive anticoagulants, there is an antidote for coumadin available in emergency rooms if needed.

    My one recommendation to you would be tested for Leiden Factor Five and related factors. This area is usually not well studied by general practitioners or family doctors and is best evaluated by specialists/

  • What are you talking about. Pickles wasn't mentioned?

  • Hello sweetie, I had very large Pulmonary embolism in both lungs, the doctors believe I had a dvt in my legs that broke off and traveled to my lungs, I needed open heart surgery to remove as much of the clots as possible. I to had a ivc filter fitted, as a complication I ended up with Pulmonary Hypertension. If you have an ivc filter I situ, I believe that you are prone to forming clots, so to come off your meds could put your life at great risk. Mx

  • Hi, after 8 dvt's and 3 pe's I've got an IVC filter too and am on daily tinzaparin injections for life. Please don't stop your anticoagulants as that will be very dangerous. If you don't take them and develop clots, bits could break off and maybe clog the filter, which would be bad. Get medical advice 😎

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