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Rivaroxaban anticoagulant 20 mg I have been put on this drug , with no follow ups

Posted , 7 users are following.

trisha83848
trisha83848

Does anyone  know anything about this drug,how to take it etc

The company will only talk to Doctors & Pharmacists, but it is so new to them they can offer no advice.

I have had a heart Abalation Op and now I am under stress about this drug

Can anyone give me some" plain english"  information

0 likes, 22 replies

22 Replies

  • lucy02639
    lucy02639 trisha83848

    Posted

    Hi Trisha, I think the best thing I can do is to direct you to the information page that patient.info have about riveroxaban; it seems to me to be very comprehensive and easy to understand. The only negative thing I have heard about the drug is that , as it is so new, no antidote has yet been produced. I know that several people on this forum take riveroxaban, and are very happy with it. Here is the link to the information page:

    https://patient.info/medicine/rivaroxaban-tablets-xarelto

  • charles67285
    charles67285 trisha83848

    Posted

    Just come of it because it made my nose bleed,  it was ok apart from that,

    just one little red pill once a day, I now take predaxa , had n ablation and pacemaker fitted just before xmas, you are ok on them, much better than waferin

    • derek76
      derek76 charles67285

      Posted

      How frequent were your nose bleeds and how long did they take to stop?
    • alan81747
      alan81747 charles67285

      Posted

      hi Charles.You said you had a pacemaker fitted and I was wondering if it was a permenent one.Why I'm asking is because I am waiting to see the consultant to discuss a permanent pacemaker.I was told they do this as a last resort and even when fitted I could still be in AF.the only differance is the erattic signals dont get through.Do you still get as tired as before and do you still feel your heartbeat..A wee bit worried about it..thanx for any advice
    • charles67285
      charles67285 alan81747

      Posted

      It is a permanent  one,  had it done. Private , my heartbea. Shows no signs  of AF as my home blood pressure monitor would pick up a irregular heart beat.

      They took me off beta blockers the day it was fitted, bu I. Feel great now,no tiredness at all,  now whether it was the beta blockers making me feel so ill

      or the irregular heart beat.

    • alan81747
      alan81747 charles67285

      Posted

      Thanx for the reply charles.I've to get a test to see how weak my heart is.If it's not too bad then the local hospital will fit it otherwise I go to glasgow for a "special"one.It just makes a weak heart beat stronger..It's the N.H.S for me though..lol.glad yours worked out and long may it continue
  • reddisa
    reddisa trisha83848

    Posted

    Trisha, another link for info on Riveroxaban:

    http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Bloodclotting&medicine=rivaroxaban&preparation=Rivaroxaban10mgtablets

    Riveroxaban was offered to me but, after a second Pulmonary Embolism incident,  the fact that this new drug 'required' no regular follow-ups really bothered me. Since I needed the reassurance of being able  to check INR levels  I decided to stick with Phenindione.

    Perhaps you should discuss your concerns with  the prescribing doctor or the specialist nurse in Haematology, particularly if you are on other medication.

    Best wishes

    • derek76
      derek76 reddisa

      Posted

      Why did they prescribe Phenindione rather than Warfarin which is a fraction of the price?
    • reddisa
      reddisa derek76

      Posted

      I don't think cost was relevant. Warfarin, in my case, was not managed sufficiently (6 weekly appointments to check INR levels and adjust dose resulted in brain anuerism and pulmonary embolism in addition to adverse interaction with Pegasys - pegylated interferon). I have few side effects with Phenindione, only negative is unreliable supply since this is manufactured in India and the UK pharmacies are regularly unable to fulfil prescriptions.  
    • derek76
      derek76 reddisa

      Posted

      What happens when you cannot get it ? It has been in short supply since 2012.
    • reddisa
      reddisa derek76

      Posted

      ..... and, since 2012, I have contacted MHRA several times about the erratic supply of Phenindione by Goldshield (I believe this company has since been taken over). The last reply received stated that both MHRA and the Department of Health were ‘working closely with the company to ensure continuity of supply’. It is usually 25 mg tablets which are  unobtainable through wholesalers for a few weeks but pharmacists usually then offer 10mg . As an aside, because of permanent risk of blood clotting, I need to know that the anticoagulant I take is at a therapuetic level and I bought a Roche Coagucheck (as used in the INR clinics) for peace of mind and control over my own wellbeing. 

      I did extensive research on Riveroxaban in relation to my haematological condition (Myeloproliferative Neoplasm) and concluded that the additional risk of bleeding far outweighed the 'convenience' of only one tablet a day and no INR checks.

  • ChooChoo
    ChooChoo trisha83848

    Posted

    i've been on rivaroxaban since mid Jan to treat a PE - this drug has only been failrly recently approved so the long term effects not really known at this time. Clearly the biggest benefit is its convienance in that it doesn't require you to watch what you eat or have to monitor INR levels vs; warafin but more expensive

    Secondary bleeding events seem to be common. I started passing blood (haematuria) in my urine after being on it for 5 days which lasted for 3 days. I've had a variety of tests to check alternative causes of the haematuria which have all  come back negative and I've had no recurrence since.    

  • kellys5563
    kellys5563 trisha83848

    Posted

    Hi guys, I'm new to this but have a question, I've been on warfarin for 12 yrs since I was 27, due to dvt and pe after and during pregnancys, my last pe was 6 yrs ago shortly after my last child was born I was sterilised after her birth and 3 mths after I had a trial off medication to see if the risk had gone seeing as there was no risk of pregnancy again however I got a pe about a month into the trial so it was decided on lifetime treatment, so the past 6 yrs I have been forgetful with my medication and have pretty much stopped taking medication apart from a week before Inr tests this has been going on some years, I know of the risks but my lifestyle has changed I've lost 6st and am fitter than ever, well today I finally admitted my poor medicine taking and have an appointment with my gp tomorrow regarding it as the hospital were shocked and worried, I find it hard remembering to take the drug I also find it hard going for the tests due to having 3 small children and a business to run, I really would like a chance to trial without warfarin again, but this drug was mentioned, I welcome your views.

    Ty

    Kelly

    • ChooChoo
      ChooChoo kellys5563

      Posted

      hi Kelly,

      no-one on here can give you the re-assuarnce that you are looking for. You will only know if you have made the wrong decision if you survive another PE. 

      personally i'd also find taking warfarin a bit if a 'pain',  specifically having to carry out regular INR checks and having to watch what i eat , so i guess I prefer the convenience of Rivaroxaban.

      I've ony been on it for 2 months and no dea how long i will be on it for. I've forgotten to take it on 2 occasions with no consequences  - I suspect many on here have  similar stories of 'forgetfulness' - but there is a major difference between missing one day of medication  and delibrerately deciding to stop taking it.        

       

    • kellys5563
      kellys5563 ChooChoo

      Posted

      Ty for the advice , I will speak to the go tomorrow and hopefully we can agree on a better course of action than my current situation.
    • derek76
      derek76 kellys5563

      Posted

      What happened when you had your INR checks? With not taking the drug your readings would be way out and they would then adjust your dosage.

      It is an easy drug to remember to take as they advise you to take it at the same time every evening berfore dinner. So take it just as yoy start cooking.

    • kellys5563
      kellys5563 derek76

      Posted

      It takes about 3 days for the drug to take effect so my Inr is usually pretty even, I take quite a high dose 15mg a day and as I said previously have been on warfarin for almost 12 yrs I take it before bed it doesn't matter when you take it as long as it's a similar time everyday, I do find it hard to remember to take it, but I run my own business working long hours and have 3 small children my middle son is also autistic so that has its own difficulties, I'm not using this as an excuse for my poor medication taking its just something that has happened over time and needs addressing.
    • lucy02639
      lucy02639 kellys5563

      Posted

      Kelly, all I can say is that if your INR warrants a dose as high as 15mg., I hate to think what's happening during the times you're not taking the Warfarin. It's like playing Russian roulette with a PE. Even if you are switched to one of the new drugs like riveroxaban, you still have to take it regularly, which seems to be an issue for you. I appreciate that you've got a lot going on in your life, but as you say, this must be addressed or, to put it bluntly, maybe you won't have a life to have lots going on in! Maybe you could have one of these phone apps that remind you to take your meds? Or even something less techy like a loud alarm clock set to ring at meds time every day? Do hope you can get this sorted.
    • kellys5563
      kellys5563 lucy02639

      Posted

      Thanks Lucy I'm currently at the doctors and hope to get this sorted, I know it all sounds very foolish of me there's much more to it than appears, and I hope to get this sorted today x
    • lucy02639
      lucy02639 kellys5563

      Posted

      No, not foolish at all, but  in need of some support from your doctor, which I hope you got!
    • kellys5563
      kellys5563 lucy02639

      Posted

      Doctor was great, has refered me back to consultant to discuss options he understands my concerns re my young age for starting taking it and the high dose and lack of care over the last 6 yrs, in the meantime I'm taking my dose daily and will hopefully come up with a better long term plan, ty for your advice and support.

      Kel x

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