Fed up!

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Hi,

I have just finished my 6 months course of taking riveroxaban for multiple PE's in my lungs. After completing my course of tablets I presumed life would go back to normal. I am only 29 who lived a very active lifestyle (pre PE), marathon running and playing football to a good standard 3 times a week.

it has only been 4 days since I stopped taking my tablets after consulting with my doctor. However I am waking up each morning with my legs sore and aching, chest pains every now and then randomly throughout the day. is this normal? Are there side effects for coming off the tablets? I am totally fed up. I feel like I'm never going to feel normal again and it's going to control my life. Although I have an amazing family around me, I feel like this is ruining me

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8 Replies

  • Posted

    Soooo feel for you

    I developed a PE in lung from hip replacement. They've put me on warfarin for 6 months, due to finish soon, and then it just stops. Without tests, checks or anything.

    I find this quite bizarre. They've conf that they just 'assume' the problem has resolved.

    I'm not convinced. I've had a wheezy chest ever since, which I've never had before. Added to which, I have another revision op to look forward to in May.

    Doesn't exactly inspire confidence.

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  • Posted

    I think as many of us have found there are after effects from the PE that no physician seems to know about...or warn you about.  The chesst pains seem to be from the scar tissue that the clot left.  I'm not sure about the leg pains though.  I'd ask the doc. HOpe you start to feel better.  You are too young for this to be a major problem. 
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  • Posted

    Hi

    I had DVT & PE when I was 33, 12 years ago. I don't remember much about coming off the warfarin to be honest but I did start running, never brilliant but I did feel fitter. The veins in my legs are damaged from the clots so I know I'll suffer water retention etc.

    In January 2015 I've now got bilateral clots in the main pulmonary arteries of my lungs. I've been put on warfarin for a minimum of 6 months but could be life as the doctor is suggesting this.

    My clots have triggers -2003's was long haul flight & misdiagnosis. My 2015 caused from foot operation & being immobile for 5 weeks- I was given heparin for 3 weeks of the 5 too.

    I've bought a treadmill ready for when I can use it which should be mid April.

    The problem you sadly have is there isn't that much known about the new drugs. My doctor put me on warfarin for that reason. Have you tried googling withdrawal symptoms?

    Good luck

    Hope life returns to normal for you soon.

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  • Posted

    Hi Sparky 85,

    Never very certain now of what normal is !!.

    I had Rivroxaban after PE in May and came off it last November and felt really well until mid January when I ended up in hospital with continuous chest pains and pains in the calf of my leg on every fifth night for 30 mins. Diagnosed I had PE again and now on Riveroxaban for life. Still get the leg pains on the same basis but no clue from the Doctors as to a cure.  My Doctor told me it can take 12 months to disperse the clots as none of the tablets do this, they only prevent others occurring.  Got to go for the camera down the throat and stomach next week as they think some of the chest pains may be acid reflux which make for similar chest pains.     I would make a general comment that so often you see General Surgeon Consultants in Hospital, and it seems hard to find someone who specialises in PE and can give positive answers to symptoms and cures.

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  • Posted

    Hi all,

    my consultant told me at the end of my 6 months to carry on taking my tablets for the rest of my life. I was not happy about this as I didn't want to take it unless I really needed to, after kicking up quite a fuss at the hospital I managed to see the top doctor who specialised in PE's. I am having an ECG scan in the next couple of weeks to check blood flow around my body.

    by the sounds of reading your posts, this is something that will haunt me for the rest of my life which is devastating news and the chances of this re-occurring is more than likely. 

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  • Posted

    Hi

    theres a test you can have to see if you are prone to the clots. I had first time round. I'm not prone to them, my clots have been caused by triggers so don't panic...you might never get another one if you're n prone.

    if I have an operation I'm treated slightly different but that's great as they are trying to help

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    • Posted

      Hi all on this discussion, the best place to get help for dvt, pe and post thrombotic syndrome is Guys and St thomas hospital  London. I have been researching for about 8 months as my son had  a massive post surgery dvt and has developed pts. Plaese see my posts on dvt and pts.

      Good luck to all.

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  • Posted

    Sparky, 

    Just got off my warfarin, I am 21 years old and I play football in college. You could say I live a pretty healthy lifestyle. The whole time Ive had my PE I always felt some sort of shortness of breath and slight chest pain. I dont know if its because I was thinking about it too much or because it was some kind of residual affect from the PE. But I feel for you, this thing is controlling my life right now. 

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