1 Year Review - Choice of coming off Apixaban

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Hi All

I used this forum initially when i went through my PE and wanted to try and use it again.

I am a 29 year old male who had an unprovoked PE in March of last year, which are investigation stemed from a clot in my leg. I have been on Apixaban 5mg twice a day for the best part of a year now.

I have had no side affects on this and gone back to my extremely active lifestyle having successfully run a half marathon, train in the gym 4/5 times a week and flown abroad a few times in the last few months.

I have my one year review with my haemotologist having had regular appointments in my first 6 months not been since October of last year.

At my age i am really hesitant to stay on the medication for life as i have grown up playing contact sports and enjoyed the social side of alcohol with my friends that i have had albeit given up for the best part of a year.

I just want to know if i am giving myself false hope that i will ever come off the medication or do i need to realise that this will probably be it for the rest of my life?

I know a lot of the decision will be between myself and my hameotologist and it comes down to potential risk, but wanted to see if anyone had come off the medication after a PE?

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5 Replies

  • Posted

    I would imagine the crux of the matter may be "what caused the clot in your leg?".

    It looks like the PEs were provoked (by the leg clot), but was the clot in the leg provoked or unprovoked?  If they can explain what caused that (surgery, injury, immobility etc.) then I would be inclined to come off the Apaxiban. If not, it is a harder choice.

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    • Posted

      They can't categorically say but at the start of the year I was flying a lot for work. 5 hour flights within 4 days of each other and potentially the dvt originated from that.

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  • Posted

    The found pes in me in November of 2016. Ive been on eliquis. Mine was unprovoked too and they never found the source. Im 35. My hematologist says in april if the ct scan comes back without pes i can get off the eliquis. She said treatment for a first time pe is 6 months. Its a harsh drug to be on the rest of your life. Do you know if your factor V or have problems with protein c?
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    • Posted

      Oh right well I've been on my apixaban for nearly a year been no mention of any ct scans.

      So I don't have the full blown factor 5 just the recessive part of the gene only increases risk by a very minimal percentage.

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  • Posted

    Hi, I'm on Warfarin since last May, as I have a small blood clot at the bottom of my right lung. I had a pneumonia before that, so my blood clot probably formed because the pneumonia. I didn't have any symptoms that I could think I have had a blood clot. I visited the GP last year quite often because of my chest infection, she checked my carves, asked about breathlessness shortness of breath sharp pain in the chest, but there was nothing. I had a CT scan 2 weeks ago, and I visited my GP yesterday and she told me that the CT result come back but I'm about to see my lung consultant, but I don't know when will I see him as I don't have any appointment letter, so the CT result still shows that the clot is there. My lung healed, but the clot is still there. My INR was almost always between the target, it happened only 2 times that it dropped a bit, so I am really thinking to come off Warfarin and try Nattokinase, as I am quite young only 34 male to take the bloodthinner life long. It is a Japanese suppliment which is act as bloodthinner. I found an article online which sais: research shows that the nattokinase enzyme has 4 times the clot-dissolving power of plasmin and supports heart health. Also sais that the synthetic bloodthinners dissolve bloodclots for few minutes to half an hour. Nattokinase on the other hand stays active in the body for 8-12hours. I was told that the bloodthinner medicines is good for 24 hours.. So regarding the article what I found it is not true. I am not telling you to stop your bloodthinner and take nattokinase, just this is another way. And somebody told me as I opened a forum about experiences of nattokinase that this is foodsuppliment you can take more and your blood will be thinner if you take not enough your blood will be too thick, I think the bloodthinner what you take doesn't need INR check so you don't know what is your INR, so for you it wouldn't be too big deal. I  asked 2 doctors what they think  of Nattokinase, of course they told me to keep taking the Warfarin as they get money if they prescibe me the medicine... But I read on amazon review of somebody stared taking nattokinase, he wrote that he had bloodclot, took bloodthinners and stop taking them when the blood clot disappeared and started to feel pain in his chest again, and stared to take nattokinase and his chest pain has gone. That's why I'm thinking coming off warfarin as I am taking it for 9 months and that small blood clot is still there... At the bottom of the lung how big the vessels are? I think 1-3mm big only so the clot is/was quite small. Also I am only 34 years old, I can't take any pain  killer with this bloodthinner as they interact with it, I had groin/loin pain for quite a long time and I couldn't use nurofen cream as it contains ibroprufen which interacts with warfarin. I couldn't take immune system booster as it contains vitamin k which interacts with warfarin. If I would need I couldn't get every kind of antibiotics as most of them interacts with warfarin. Sorry to write you all this, but you can search of the Nattokinase and can decide what you see better option for yourself.

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