New to PE

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I was diagnosed the first part of July with a PE in my right lung with damage within the lung. I am currently taking Xarelto and will see a pulmonary specialist next week. I have continued breathing problems and exhibit headaches every afternoon. I also have a flu-like feeling every afternoon. Anyone out there similar?

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  • Posted

    Try to stay calm, you have a long road ahead of you, and a lot of healing to do. As for the sick feeling, many people feel like that on Xarelto. Try being switched to Eliquis or Savaysa.
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  • Posted

    Hi embono,

    I know how you feel, I was diagnosed at the begining of June with clot(s) in the lung which in turn caused part of the lung to collapse also, a question mark on my heart, I have been told the lung will recover.

    I was put on eliquis (apixaban) for 3 months but, after a month they made me very ill, I told the doctor I was not going to take them again. I take natural anticoagulants, bromelain, ginger, flaxseed, garlic and cod liver oil and drink a lot of water, I walk and exercise everyday. I do not know how long it will take for the lung to recover but I do get out of breath occasionally.

    Your headaches etc, could be caused by the tablets as eliquis caused headaches, sickness and dizziness which were mild at first but after a month got much worse with very bad anxiety.

    The eliquis does not have an antidote, I think xarelto which is another new anticoagulant is the same, no antidote.

    I hope you do not need to be on these tablets too long and you feel better soon.

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  • Posted

    Hi,

    Sorry to hear that, but glad they caught you when they did.  

    It is most important that you stay on one anticoagulant or another at this early stage. Natural remedies tend to be at the weaker end of the spectrum and could leave you un-covered. They also have no known metrics for dosage.  Sure, some people will be ok, but no guarantee who. All drugs are poisons of one kind or another (even the natural ones) so best take a regulated one.

    Different anticoags suit different people. If you are fine on the one you have, stick with it. If not, as for a change. I had two - first had side effects, second is ok. Been on it for 2 1/2 years.

    Make a list of questions for your consult next week - the mind has a habit of going blank when you are in the room. 

    You should be fine - the worst is over, but recovery can take a while (not always, just sometimes).  I couldn’t cross the room on day 10, but now can run for a bus (just don’t want to....).

    Good luck and let us know how you get on.

    All the best

    Peter

     

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  • Posted

    The tablets you are on are really horrible. I got a numb and pins and needles feeling on one side of my body from them as well as the worst headaches I have ever experienced. I also had no appetite, very bad nausea and extreme dizziness as well as green diarrhoea! I changed to apixaban, I still had headaches and nausea but to a lesser degree. I got very bad chest pains from the tablets so bad that I went into a&e twice thinking the PEs were back. They eventually put me on tinzaparin injections which give me painful bruises and sometimes lumps, but the anxiety and horrendous side effects have gone. I get mild nausea and dizziness and bruising but it is preferable to the tablets. I hate feeling anxious and like I am not in control, the injections give you back that feeling. I have always hated injections, but when it comes to side effects, I will choose them over the tablet equivalent.

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  • Posted

    Hi,

    Sorry to hear about your PE and please rest assured that what you're experiencing is not unusual.

    I had a PE in the right lung (in January) and was initially on Xarelto for 5 months. I also had headaches and found that drinking enough water (for me 64oz) daily alleviated them. I eventually switched to Eliquis and have no side effects at all now.

    Healing takes time, as Peter said, and it's important to stay on the blood thinner your doctor prescribed. Each of us heals differently, but you may experience pains and aches and fatigue in the early months especially, which are perfectly normal as your body heals. Whenever I had questions or was in a panic mode over something new I was experiencing, I came to this forum for support. You will find knowledgeable, caring people here, like Peter and others, who will help you immeasurably.

    Just take it one day at a time and be patient. Your recovery will take some time--how long is hard to say. But, I can tell you that 6 months out now, I feel good and I'm back to exercising and living my life again. You'll get there. Good luck and take good care of yourself.

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    • Posted

      Thank you so much! Your message brought tears! I have been so down and I needed to hear some positive vibes!
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