So Confused: I had DVT and PE in both... - Anticoagulation S...

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So Confused

Coumadin08 profile image
7 Replies

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?

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Coumadin08
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7 Replies
daisyd profile image
daisyd

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

relkcam profile image
relkcam

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/

Daneball profile image
Daneball in reply to relkcam

Agreed. The only thing I don't agree with is that there are crappy side effects. I have an ulcer due to Eliquis as well as tendon issues which have greatly effected my physical fitness level. Blood thinners are known to weaken tendons.

Wittycjt profile image
Wittycjt

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

Polaris73 profile image
Polaris73

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

WestWalesPaul profile image
WestWalesPaul

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 😎

Daneball profile image
Daneball

IF I were you I would go to a hemotologist for full blood work up. I have Factor V Leiden and got my first DVT at 8 months pregnancy. Also have May Thurner Syndrome. Both can cause DVT. Lupus also can be a cause. There is some reason you are getting them. I would really encourage you to not stop your medication without a professional guiding you. Possibility of stroke or DVT go up if you just go off your meds.

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