Pulmonary embolism' after the dx

Posted , 6 users are following.

i was finally diagnosed with a PE in March, 2016 but have suffered with the horrible symptoms for 17 months ( I was misdiagnosed in 2014).  Now, I am on Xarelto, 20 mg.  I am still having, often and for  hours at a time, the sharp, stabbing feeling from front to back difficulty and at times, extreme nausea.  Post PE, can anybody tell me what kind of symptoms they are having now that you are on blood thinners? I get dressed to go to yoga and by then I am so tired, I cannot go.  Distressing but trying to put a good face on it.  This optimist needs a dose of what can I really expect after a PE.

1 like, 13 replies

Report / Delete

13 Replies

  • Posted

    HI I had a Pe 15 mths ago was on Warfarin then tried Xarelto for a while didnt suit me back on warfarin I found Xarelto. Made me itchy  leg pain and weight gain It does get better the first 12 mths are hard as your body gets used to the medication Good luck 
    Report / Delete Reply
  • Posted

    Hi, I was diagnosed in January, lucky for me I was abroad so it was discovered quickly.  However it was months before I was referred to a consultant in UK, that was a scary period as I only had the knowledge that I was to take pills for 6months but no support, constant calls to my surgery and I felt a real nuisance, hence I found this site.

    I had a painful back/side for weeks... In fact recently I am getting them again   

    Severe dizziness was a symptom of the pills, I changed meds and now mild dizziness, I take a bottle of water everywhere and drink a lot... It helps.

    Some people get other side effects to the meds, nose bleeds appears common.

    Previously I never felt weary during the day but now it is like a blanket being thrown over me but I just work through it.

    my consultant said exercise is good. Never really say if there are any limits My foreign consultant was adamant that I must avoid falling over (gawd how often do we fall but I started walking like a space woman avoiding every crack) and to avoid banging my head!!.. because of the meds.

    Now almost 4 months on to my family/ friends I am normal, mentally I do have lots of wobbles. 

    I would say if you have severe side effects go to dr. Mentally you will start to relax, I felt better being at work but part-time... my concentration is definitely effected and I am shattered, I relax but try to keep my day normal and not take a nap, I don't want that habit to form.

    good luck not that you need it you are diagnosed so on the mend. 



    Report / Delete Reply
  • Posted

    I'm 18 months post PE and only this week have felt like I am finally regaining my energy and my breathlessness is beginning to improve. I am also doing pulmonary rehabilitation which has made a huge difference. A year after the PE I was so scared and depressed that I went back to the consultant and my GP and got the referral for rehab. It wasn't until I got there that the nurse finally explained the physiology of breathlessness. The muscles around our lungs, the intercostal muscles become out of shape during all the rest as do the quadriceps in the thighs, which require a lot of oxygen. So even though the clots have dissolved we are still breathless because of muscle weakness. I've been on Xarelto for 18 months and am now on it for life. I don't have any side effects at all.
    Report / Delete Reply
    • Posted

      My heart changed shape with a massive PE, we could look into the physiology of breathlessness, heart strain, conscious & autonomic pulmonary cardiovascular nervous systems, emotions, heart lung tissue scarring, feeling under the weather, exercise with clots insitu, exercise that could disturb clots insitu, all the above combined with the MH aspects of vte pulmonary hypertension and depression, jobs, mortgages and food, nutrition, diet and having fun
      Report / Delete Reply
  • Posted

    Hi and welcome,

    Mine was about 8 months ago and recovery has been steady. I did get chest pains and still do to a lesser degree. I was told these were likely from scarring and would reduce over time. They have.

    I agree wholeheartedly with Lazeedaze about always carrying water.....if I am out for any amount of time, I always take loads of it. I drink a lot at home too.

    I do get headaches, but that may be nothing to do with the PE or its meds. No way of telling really.

    I had two points where my recovery took a jump forwards - once around 3 months in and again around 7 months in. 

    I was originally on Xarelto, but didn't get on with it (fearsome joint pain and some bleeding). Now on warfarin, which is better, but fiddly to regulate.

    PE seems to take its toll psychologically, both before and after the PE (in fact I think severe anxiety is one of the symptoms of PE).

    In the words of Douglas Adams - "don't panic", BUT, if you are concerned about anything, go to A&E.  Was the hospital that told me that...good people.

    Lastly - if you get in front of a specialist, ask lots of questions. Better still, make a list and take it with you. 

    All the best Peter

    Report / Delete Reply
    • Posted

      Thanks, Peter.  I asked my hematologist lots of questions when I was there but she started me on Xarelto and I don't have an appointment in 8 days and now I have lots more questions, like do these hand and feet and leg cramps come along with the drug or the blood clot?  I never dreamed I could be so tired.
      Report / Delete Reply
    • Posted

      I definitely had the exhaustion on Xarelto. Not sure about the hand, feet and leg cramps per se - my pains were in knee, ankle and neck joints. I really didn't get on with it and family called the consultant, who then switched me to warfrin.  All that disappeared like a charm when I switch to Warfarin. Others have switched the other way and have no side effects on Xarelto, so no treatment appears to be best for all. 

      If you are struggling, it could be worth trying to get in earlier or maybe have her call you to discuss? 


      Report / Delete Reply
    • Posted

      I have already been on eloquis ( with terrible side effects.)  The Xarelto is better overall but I am so tired.  Not getting out of bed before 1-2pm and am dead to the world for close to 12 hours.  Not normal for me. I guess I had this crazy idea that once I was dignosed and put on blood thinners, I would be remarkedly better.  Seems to not be the case. I drink nothing but lots of water but I have lots of auto immune conditions that all seem to be flared up with this extra anomaly going on it my body.
      Report / Delete Reply
    • Posted

      Sounds very familiar.  After I switched to warfarin, my tiredness reduced, but by no means fixed. It has been 8 months now and things are much improved.  The last week or so has been a big jump - fixed the car (4 hours crawling under it) and fitted a new built in fridge. Beyond my wildest dreams even a month ago....so it does get better!!

      Not much help, as you can't control the weather....but my tiredness is less when the weather is warm. If there is something in that, at least summer is coming.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up