New PEs

Posted , 10 users are following.

I recently started to feel very tired and my breathing was getting worse again. My GP gave me a new Ddimer test and sadly it was raised so off I went back to hospital for more tests and a VQ scan. Multiple PES have been found again sadly only after 4 months off rivaroxaban. I am now a lifer but what I wanted to know from anyone out there I'd how tired and lethargic you feel? I am female and 50 and until last summer when I had my first bout of PEs I was fit and healthy. All I want to do now is sleep and my legs feel like lead!

If anyone has the same problem I'd really appreciate some pointers as to how you deal with this.

I'm certainly not as sick as last year my ddimer was only 922 this time compared to 8734 last September! But I hate feeling so tired.

Thanks in advance to anyone who has any suggestions.


0 likes, 11 replies

11 Replies

  • Posted

    Hi I too had more bilateral PEs after off rivaroxaban for 1 month I am also on it for life now. It is worrying
  • Posted

    Hi Sam,

    Sorry to hear about you getting another bout of PEs. 

    Not sure if my experiences are quite the same, but maybe they will help anyway:

    Diagnosed with bilateral PEs in Aug 2015. Very breathless and could hardly walk across the room. Improved a little each week, but headaches, joint pain and lethargy BIG time.  Taken of Rovaroxiban in October and put of Warfarin - headaches reduced dramatically, joint pain gone and lethargy reduced (but still tired). In December, dramatic increase in stamina. Still tired though. Gradual improvement each week until about March/April when I had another sudden improvement and was tired less often. Saw Pulmonary specialist in June and was signed of as normal with breathing quite a bit above average. 

    Where I am now is a world away from 12 months ago, although I do still get tired for no apparent reason some days. Not too many now and goes off after a bit. Breathing is good, but affected by dust. Headaches are few.

    For me, one of the biggest changes came when I moved off Rivaroxiban - I thought I was going to die when taking it. I know some tolerate it well, but I did not. Best day recently was when I spent 4 hours working under the car. I hate mechanic work, but it meant a lot to be able to do it!

    So, after a year, am I back to normal? Probably not, but feel this is good enough.

    I hope that helps and wish you a speedy recovery.

    All the best Peter

    oh...and I am 62.


    • Posted

      Hi Peter thanks for your message. I was in rivaroxaban before for 6 months but had no real side effects. I came off them in April as was classed as a low risk so thought why take tablets when I don't need too..... more fool me.

      I shall give the tablets a couple of months and see how I feel but at present I am so tired. Anyway onwards and upwards. Best foot forward. I'm not letting the pesky clots get the better of me.

      Sam x

    • Posted

      clots come in different sizes - each one can be minor or major depending on your lifestyle/exercise regim. Those that have recurring clots under the single technology apprasal/NICE guidance 287 (before/after) should have regular full body CT/PET scans to monitor progress during recovery prior to coming off Bayer's Xarelto/Rivaroxaban pop a pill miracle cure. 

      This condition is both physical and mental - waiting for the next incident is debilitating and potentially fatal. All healthcare and medicine is science. Taking a tablet a day and hoping for the better is faith.

      I can propose VTE aftercare program for futher analysis.

    • Posted

      Hi Sam, 

      Yes, my friend's husband is 100% on rivaroxiban (luck devil). It is really convenient.

      Re-reading your original post - you must have had pretty much the same time-line as me. So if you came off 4 months ago, that would have been in March, when I was still recovering in (just before my last jump in improvement). Maybe you were still recovering when the rivaroxiban was stopped?  I would have felt very nervous coming off antigoagulants then.

      I guess for me it was an easier decision, as my consultant said it would be a very brave man that took me off medication (quantity and size of clots).

      On the positive side, if I am still seeing improvements almost a year in, I would guess you will too now that you are back on the meds. In my experience, it really DOES get better, just a bit slower than some other conditions. I guess 12 - 18 months. 

      All the best.



  • Posted

    Hi Sam

    I has a large saddle P/E just over 18 months ago and was on Warfarin to start with which made my hair fall out!  Then started on Rivaroxaban which left me feeling dizzy/lightheaded and tired all the time.  Now been on Apixaban for the last couple of months which I think I am tolerating slightly better.  Perhaps you could discuss with your consultant alternatives to Rivaroxaban?

  • Posted

    Hey Sam :-)

       I suffered my first bilateral PEs in 2011 and  3 years after stopping warfarin I suffered my second lot so am now a lifer on Apixaban.

       This second lot were a huge blow to my mental and physical health but having just passed my year on anniversary I can now say I'm about there again. I still have the odd time I'm more tired or more out of breath than usual but it passes. I've also had pain on and off since my first but can now differentiate between the chronic and acute pain.

       I was exhausted and my legs felt they'd done a marathon after a walk up the stairs.

       My advice would be to push yourself to do a small walk a day even if you don't feel like it and build that up gradually. However, try to also lower your expectations and take one day at a time without being too hard on yourself that you can't do what you want to do.

       I'm only too aware that these words sound easy on paper but are challenging to put into practise. 

       I was also anaemic which was crrected but I presume your bloods have been checked and are ok? 

       Good luck :-)

  • Posted

    Hi Sam,

    It has been about 5 weeks since I was diagnosie with bilateral PE's.  They discovered that my clots originated in my groin area.  Last Friday, I had another sonogram because of the funny feeling I keep having in my groin area. I was told that my clot is sitting on a valve and is causing vein reflux, thus the strange feeling I am having.  Just wondering if they found where yours originated from and if possibley that could be causing the heavy feeling in your legs?  I was told that PE's reek havoc on our vascular system in many ways.  I hope things start looking up for you!

    Best Wishes,


    • Posted

      Hi Terri

      No no one has even looked at me to find out why this has happened again. I just got here are the tablets and you're just unlucky. Great answer. I don't feel fantastic and my muscles ache all the time but I just feel I have to get in with it.

      I am going to see the doctor again when I get back of holiday and see if they can find out where my PEs came from this time. Thank you though as I will mention various aches and pains. Every ache and pain I think something else is wrong.

      We will get through it...we're survivors.

      Sam x

  • Posted

    Hi Sam,

    I'm 49, female.  i had Pe's back in April and from that point I've had trouble sleeping, been exhausted, low mood and in constant pain throughout my body.  I have an under active thyroid and had to come off HRT too, havent been back to work since.

    i have just been diagnosed with Fibromaraliga a chronic pain condition which they think can be triggered by stress or trauma.

    i kept having to go back to the GP to get him to look into it.

    im due to come off apixaban in October for a month for blood tests and not looking forward to it.

    good luck, sounds like you've been in the wars x 

    • Posted

      Just seen this post. Could it be just the apixaban giving you side effects? You are describing exactly how I feel and I'm waiting to come off apixaban onto warfarin in the hope of getting some relief from the constant aches pains, headache, urine retention etc etc.

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