Decision of coming off Apixaban

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Hi All

I have used this forum before and was really helpful so thought i would on another subject.

Long story short back in March of this year i had a unexpected PE which resulted in me having Thrombolisis treatment. I have since been on Apixaban for the last 6 months with no real side effects at all (touch wood).

I am now having my 6 reviews with consultants where is getting to the point where a decision could be made for me to come off the medication or not. I have since found i have the recessive Factor 5 Lyden in my blood. At 28 years old i am finding this a difficult decision as im told by my consoultant that there is around a 5% chance of an unexpected PE happening again. However i am facing a battle against a quality of life where i am not playing contact sports which i have done for over 20 years and enjoying alcohol with friends.

In terms of my current physical condition i am running a half marathon in 2 weeks time and seen no ill effects of the training on me.

It would be interesting to know if anyone has made the choice to come off the medication as ive been told this is quite rare to happen to someone of my age.

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6 Replies

  • Posted

    Hi, 

    have  you considered that you may be born with  recessive Factor 5 Lyden and for the first 27/8 years your blood has been clotting intermittently leaving deposits in your upper, lower mid deep veins until they grow to a critical mass and either cause swelling or some of it breaks off causing a PE.

    Running, weight training and impact exercises causes shock, internal compression & vibration to your muscular-skeletal system and can disturb, dislodge, break off existing clots in your body.

    Being of evolving age, i would ask for a complete body CT scan - if able ( take out a loan) and get done by NHS or private. This could go towards a 'fit note'. And then have periodic INR monitoring?.

    This could provide valuable R&D data on how peoples genes & blood behave, before and after anticoagulation.

    5% chance of unexpected PE sounds like nonsense, any percentage can be monitored and assessed by thourough scanning and periodic blood testing.

    I would be looking into foods that support people that have a history or are prone to clotting. It is shameful that our NHS health experts don't set out dietry or hydration guidance for clotties.

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  • Posted

    I had a doctor tell me about an all natural supplement that helps with keeping the blood thinner and moving easier. It is called Nattokinase. I am approaching my 3 mo scan to see how my PE's are reabsorbing. Once I come off the Xarelto, I plan to take it for pure peace of mind. You might look into it if you are concerned.

    Well wishes,

    Terri

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  • Posted

    Hi, I'm 33years old, and after a chest infection there is a blod clot formed on my right lung. I have no symtoms that I have blood clot a chest infection CT scan showed it. So now I'm taking Warfarin. My boss's father who is old, took warfarin before and his doctor changed his medication to a weaker one and he got a stroke. So I told to my consultant that I don't want to stop taking the blood thinner if I had to start taking it. My only problem taking the blood thinner that I cannot dive any more, and I liked diving. But I would say it's better to be safe than another maybe a bigger clot forms again. My father has a PE but not his age 33, he was around 46years old and he had to stay in the hospital and couldn't stand up because the doctors didn't let him to stand up, his heart rate was very high. So I am staying on blood thinner, but the decision is yours.

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    • Posted

      Hi,

      PE's could be difficult to diagnose, maybe the doctor's listened to your description of symptoms and presumed you had a chest infection. And as gave you antibiotics as a default pathway for initial pain in lungs?

      Were you coughing intensely prior to PE? Was the infection contagious?

      Doctors have a duty of care for the patient, and also their immediate dependants. A decision to change the posology of an anticoagulant must be informed, and by a competent consultant. A UK subject/ patient is at liberty to exercise their freedom of choice and live their life as they wish whilst being sensitive to the needs, wants and expectations of their support/ social network.

      The consultant/head physician has a professional duty in honouring codes of ethics, professional licence, whilst maintaining integrity of NHS values/principles, health & social care act, their profession and rights of the UK person/human.

      In the interest of sound decision making, I would insist the consultant provide a consent form (like a disclaimer) illustrating the potential dangers of changing dosage and foreseeable consequences regarding changing posology and contraindications of anticoagulants.

      These executive level, professionals and consultants- are highly educated, qualified and experienced appropriate persons, experienced in all aspects of clots/thrombosis and have extensive network of inter alia professionals on call that could drum up a consent form template in response to a rudimental request, protecting everyones rights and mitigate insurance/professional negligence or professional incompetence claims.

      All in all, alternative exercises could be as fun as diving. I apologise in advance for grammatical/spelling/comprehension errors, on( touchscreen phone), I hope you get the jist of this reply.

      Take care atb, find out as much as you can, and then see your consultant for advice.

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    • Posted

      Hi, thanks for this long answer for my reply. I've had pain in my lower right lung this year the first few days when I was lying on the bed the muscles started to shake so I hardly could sleep. There was one position where was no muscle movement/shake. Last year I had another chest infection on my left lung, which probably came from the mould when I cleaned our mouldy wall behind the furniture... But this year the mucus colour was different than last year. This year was more browny colour than red. I saw the GP many times, she gave me 3 boxes of antibiotics which didn't really help, always checked my carves, asked whether I am breathless or do I have sharp pain under my shoulder, but there was nothing like this. I didn't cough all the time, I mean when you have a cold you cough more I think than how much I coughed. My wife didn't get anything from me, and nobody else got it from me. The first consultant visit the doctor sucked out some fluid from the outside of the lung, this doctor did last year my broncoscopy after that I had my first CT and a week later I saw my last year's consultant again, he compared the 2 CT images together last year's one and this year's one, and the 2 screens looked like when you put a mirror in the middle. Bigger infection in the middle and smaller one at the bottom. So he surprised very much how could the infection placed to the same place but of course this year on my right lung. He didn't mentioned anything that he thinks I have blood clot he just told me see me an x-ray after 3 month time. And around 3 weeks later I had a call from the hospital asking can I go in as soon as possible to the A&E. I went in, they did a blood test, blood pressure and ECG, had to wair around 3-4hours for the blood test result and a nurse told me they think I have a blood clot did the conultant mentioned me... I told the nurse no he didn't. So they gave me the blood thinner injection and had to go back the following Monday for another blood clot specialized CT, which showed that I have had a smallish blood clot at the bottom of the right lung so they gave me the warfarin too. I had the nuclear medicine check up around a week ago, to check whether the blood clot has gone or not, but I will see my consultant only in December, so I don't think I will know the result of the nuclear medicine earlier than that.

      I read another advice in this topic to Dissolve Blood Clots with Nattokinase. I will definitely ask this in a health shop and ask my consultant or GP, because it works different way than the blood thinner, so I might be able to dive again if I could stop the blood thinner and take the Nattokinase and maybe garlic tablets too. I have a friend who had blood clots after giving birth to her child she also took blood thinners, but now she takes only garlic and omega 3.

      Thanks again your reply

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  • Posted

    Hi there,

    im almost at the same place as you unexplained PE in March and Apixaban for 6 months. I'm now off it for four weeks to allow checks for clotting conditions, family history of DVT although I already think I will be on the reduced dose for life.

    2 things about apixaban,

    1, they are currently working on an antidote and indicationis it will be available from next year, 

    2. You can drink while taking Apixaban, it's only warfarin you can't take alcohol with.  Nurse told me that's why lots of people on warfarin want to switch.

    long term it will be your decision, consider other factors like, body mass, family history of clots and lifestyle.

    good luck

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