Should I push to come off apoxafan?.....

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Hello, I had an ovarian cyst the size of a melon 6 months ago, it was 27 x 20 cms and I looked 9 months pregnant. The cyst was pressing on blood vessels in my back, blocking the blood flow and the result was a very swollen left leg and clots to my lungs. These showed up on a CT scan, I had no symptoms, except discomfort in my HUGE leg. I had surgery in November, cyst removal and a TAH in case cancer was present. It wasn't and I had my post op meeting with my surgeon this week. No more treatment so I am thrilled!  He wasn't prepared to confirm that I should stop the apixaban though, "the physicians put you on it, so I don't feel well placed to tell you to stop." I don't want to seem ungrateful but.......I want to get back to where I was now!!

The swelling in my leg went down within days of the operation and I feel good but I can't ride my horse or do stuff I used to for fear of a fall or other injury. Should I just stop it? I have another 4 weeks supply which I am willing to finish but hope that I can stop after that! I have been told the clots just disperse, is nearly 6 months long enough? (The hospital don't do further CT scans it seems, they just expect clots to dissolve over time.)

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  • Posted

    Typical treatment for first time pe or dvt is 6 months of thinners as long as you don't have any clotting disorders or auto amunine disorder related to clots. Clots usually to dissolve back into the blood stream during this time. Sometimes long for for some people everyone's different. When I had my small bilateral pes in November of 2016 after 6 months I had another ct was given the all clear and taken off of thinners. So far I've been good since coming off may 2017. Not sure exactly how I got it but possibly due to kicking a door 20 30 times. I'm not sure if your in the UK or US but I would push to come off and take baby asprin. That's what my pulmonologist and hematologist have me on.

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  • Posted

    Have to agree.....I would want to be off the thinners too.

    They know what caused the clots.

    They removed the cause.

    No reoccurrence.

    Maybe track down the person who put you on them and ask what purpose they serve post surgery?  I am guessing none.

    Good luck!

    Peter

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  • Posted

    Hi,

    ?I'd be talking to your specialist or at least your GP, Cysts are known for growing back, not always, perhaps this maybe why your surgeon is stalling, he/she would know, instead of saying he isn't "well placed to tell you to stop". Perhaps they may of found you are prone to blood clots, they can tell via blood tests, they would of checked it when they did blood tests if you had any.

    ?I was given the all clear myself from PE's a couple of months ago and I thought the same thing, I could stop taking medication, both my GP and specialist (cardiologist) said no I have to be on them for life along with aspirin, I asked why, I was told I have a hereditary disposition of them reoccurring again over time, I was already on aspirin for another condition.

    ?There really isn't anything stopping you from getting back to what you enjoy if you have recovered from surgery, they advocate to get back to your normal lifestyle as soon as possible, the only thing they do point out is it's not really a good idea to play contact sports.

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  • Posted

    I just came off coumadin after multiple bilateral pe. I was seen by hematology. Was told I needed two normal ddiner tests and a clear leg scan. One month off repeat ddimer and hopefully say off. good luck

     

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  • Posted

    Thank you all for your replies, I'm very grateful for your feedback. I have been told not to ride or do anything risky lest I take a fall and bleed internally so I can understand the reasons for the advice, just a bit retsrictive.

    Yes I think going to my GP is a very good plan, I will do that once I've finished my course - that will be over 6 months since I started them. I'm in Renfrewshire in Scotland and can't praise the RAH in Paisley highly enough, I had wonderful care. I suspect they won't give CT scans willy-nilly  due to NHS budgets, but that would be the definitive answer wouldn't it?

    Many thanks again and good luck to you all on here.

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    • Posted

      Hi,

      ?Yes that contrast CT scan would be the definitive answer, I find it strange that your health system may hesitate on scans, I mean I know there's probably policies in place for unwarranted tests but in your case it's warranted because the doctor wants to know 100% sure your lung clots have dispersed.

      ?Yes doctors give conflicting information in regards to PE's, I was told to rest but make sure I got up and at least did some walking and if capable slowly start  getting back into my old routine work wise, I could return back to my hobbies ASAP but was informed that if contact sports was one the advice was not to continue, then another doctor/specialist says go for it, it's no different from being in an accident especially the unlucky ones that have their major arteries cut, if you understand what I'm trying to explain, some people that aren't even on blood thinners have trouble stopping their wounds from bleeding, but in reality if tended to in a swift manner the bleeding can be stopped whilst on blood thinners, it's just that much harder than a person that is not on anti coagulants. Another doctor told me that I can return back to everything if I feel up to it but I am to come straight to emergency if I have a fall and knock my head or bang my head on anything and start experiencing headaches, dizziness or blurred vision, the major concern there is patients are more prone to set off a bleed into the brain. You can only follow your doctors instructions.

      ?All the best and hoping your specialist/doctor says you can come off the anti coagulants smile

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  • Posted

    Thanks you for your responses. I think they are reluctant to give a further scan because of NHS budgets, it is an expensive procedure and not something they want to do if they are pretty certain the clots have gone anyway. My husband did ask when the clots were first diagnosed and was told "we don't do further CT scans".

    You are right, the doctor and nurses emphasised to me when I first went onto apixaban that I must go straight to A&E if I experienced a bang to my head, quite scary actually they went on about it so much!!  Bleeding didn't seem to be regarded as an issue,  and to be fair I have cut myself a couple of times over the last few months, but bleeding hasn't been excessive or hard to stop. No it's all about internal bleeding and bleeding to the brain that exercises the medical profession.

    Thank you very much for your input, I plan to see my GP at the end of April if I don't hear from the surgeon who carried out the operation.

     

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