Xarelto, need encouragement

Hi folks. I've been lurking here for some time and am really grateful for all your posts.

I'm F, 68, with PAF - about 1 hour every 2-3 months - and have been taking 75mg aspirin. Doctor has just prescribed 20 mg Xarelto daily, and it really, really scares me, although I know it is the right thing to do.

Any comments and encouragement would be very welcome. Thank you, all.

40 Replies

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  • I have similar symptoms except when I have an episode it can last 24 hours before converting on its own. I was also on aspirin therapy and last spring when I turned 66 I had the anti coagulant conversation with my EP. We decided it wasn't worth the stroke risk so last May I started taking Pradaxa. I agree that it's very scarey but knowing that I could have a stroke and be paralyzed or worse I made the decision. I have decided to not worry about the bleeding risk and continue on my journey. By the grace of God go us, best health to you, Gracey

  • I had PAF all the time for 31 months , quite exhausting to do anything . I have been on Xarelto for three years , before that I was on rat poison (Warfarin) .

    The risk of stroke / blood clots is far more likely than fatal bleeding. I find I do bleed from garden incidents ( clumsy ! ) a lot more but generally ten minutes and its stopped.

    Doesn't seem to have any uncomfortable side affects and it seems easier on the system than warfarin.

    After my first CV I was on aspro 100mg but I have changed which specialist I use and Xarelto was preferred.

  • Blood thinner is a good thing with little to no side affects. AF only gets worse with time. After dancing with the AF devil for a few years and trying to control with drugs I had my Ablation a week ago - I am so so easily tired as my heart heals. I am on Pradaxa myself. *When I get my life back, as I hope to, I will go back to my normal 60 and single very physical lifestyle... Will make these two-three months healing worth it. *So You can live with AF, as my doc says, it's the stroke that will get you caused by AF - the blood thinner will protect you from that. :^)

    When I first found out I had AF I was wrecked. The longer I had it the more comfortable I became with it. But the events started coming closer and closer. Twice in two months lasting more than 24 hours until I scheduled the Ablation.

    At your age and how physical you are that may be all you need. Pills.

  • Hi Sibelius

    Understand your fears, we all have had them and we have all gone through them, but actually? You are much safer now than you were when you were taking aspirin.

    In the UK aspirin is no longer allowed to be prescribed solely as an anti-coagulant for AF due to it being ineffective, and you have to be prescribed an anti-coagulant like warfarin or one of the newer drugs such as Rivaroxaban which you are taking.

    I take Rivaroxaban and to be honest it's trouble free and easy, I would reccomend that certainly at first WITH food, not before or after but during, you will find it easier.

    Risks? sure there are some some people don't get on well with it, and there is always a slightly heightened bleed risk, BUT you have now reduced that overall risk of stroke, and remember that the AF strokes are often the very worst kind leaving you either dead or drooling in a corner somewhere.

    I do suggest you read loads and loads of information about stroke and AF, try the AFA site in the UK loads of useful information, and knowledge is key, once you know that this drug is saving you then you will feel a lot happier taking it.

    Be well

    Ian

  • I was reluctant to go on blood thinners but am very happy now on Pradaxa. Also very happy to be on the new form of blood thinners called the noacs or something like that. My cardiologist told me a story about being in the hospital that week with a patient who would not take blood thinners and he had a stroke and the cardiologist said his wife was so upset that he would not take the blood thinners and then actually did have a stroke....i realized it would be unfair to my community of friends and the people around me to have a stroke and be a burden....so i take the blood thinner for both myself and the people in my life. I have no fear at all about bleeding....when i do have a cut its no big deal........

  • I have dealt with PAF for several years, had an ablation about 2 years ago, which helped a lot, but did not entirely do the trick, so I'm looking at another one in the near future. I was on aspirin at first, then when things got worse went on Pradaxa, which I could not tolerate. Now I am on apixaban (Eliquis is brand name in the US), and I don't even know I'm taking it. I bruise more easily, and bleed a little more if I cut myself cooking, but really, I bleed less and bruise less than when I was on aspirin. Given the choice between chance of stroke, or bruising somewhat more often, I'll go for the latter. Good luck, and keep optimistic.

  • As everyone says, you should be more scared of having a stroke and not taking xarelto than any side effectats from xarelto.

  • I refused anticoagulation to start with because I was convinced it would turn out to have been a bad idea, but everyone threw up their hands in horror and in the end I capitulated. I was thoroughly miserable for months, partly because I was taking Warfarin and never got stabilised, felt unsafe and was constantly going for blood tests. When eventually I changed to Xarelto it was like coming out of darkness into sunshine. I like the sense of constant protection and I don't have worries about bleeding. Three years of anticoagulation have thrown up no problems. Anyone is at risk if injuries are bad enough and it never bothered me before I took an anticoagulant. I'd far rather bleed to death than have a major stroke.

  • Hello. Have any of you had to have any kind of surgery since being on xarelto? My main fear is having to stop the anticoagulant before having thyroid operation or cataract operation, both of which are on the cards in the near future.

    Would appreciate any feedback

    Leener71

  • I had major surgery back in June and had to stop five days before and five days after before resuming. There just ultra cautious about operations where a major bleed is expected anyway. I had no worries about stopping for a short period.

    A thyroid or cataract operation shouldnt need such a large abstaining period.

  • I had a total hip replacement following an accident in July this ear.They stopped Apixaban in hospital for 2 days before operating and morphine subdued pain while I waited. The op. went very well and I am now back to 95% normal.

    I would not , in your shoes ,overworry about bleeding withsmaller ops. You will be advised by the hosp. dept. who will operate and you will need to take their advice.

  • Why are you getting a thyroid operation?

  • Rivaoxaban is far easier to reverse prior to an operation than Warfarin. Having had a slow brain bleed whilst on Warfarin I was told I would have to wait a good number of hours before they could operate ??? But with Rivaoxaban ( still spelling gets me ?? ) it takes a lot less time to reverse and you only need to rake it once a day & no visits to surgery to have an INR Check . Go for it !!

  • I've been on it rivoxaban for 18 months since my first AF.

    I have been ok. Thankfully.

    As far as I'm aware, I'm no expert it is to help prevent strokes or clots.

    Please take it. Don't worry too much.

    But speak to your specialist nurse to get confidence in your meds.

    Take care. Good luck.x

  • The advantage of NOACs is their short half live so stopping for a major operation means you stop only a day or so before rather than five as in warfarin. You may be able to bridge with clexane or similar injections but over all you will be protected for longer.

  • I have taken xarelto for quite a long time combined (I have had various episodes of AF) and have not experienced any side effects, except that i bruise easier and the bruising takes longer to heal. I am 43 and like to be very active. Bruising from a fall while trail running or mountain biking takes more time to heal than pre-xarelto - but the bleeding from these incidents was not as bad as i expected.

    I know that you should not be on xarelto permanently as it does have negative consequences that become problematic in the long term (but I don't know what the alternative is)

  • What happens when you go off Xarelto? Do you take another thinner?

  • Been taking Xaralto for over 7 months now, found no problems with bleeding. Any cut or blood test doesnt seem to have changed one bit. Even if you may bleed a bit more isnt it better than a stroke? My AF episodes increased in number and lenght, sometimes over 30 hrs. Then my cardiologist suggested Flecainide, 50 mg twice a day, still had it but not that often. Then he doubled the dose and so far so good, no more AF.

    Good luck

  • I have been on Xarelto 20 mg for three weeks now, also Maltaq 400 mg twice a day. I experienced AF once so far, 156 BPM for 5 hours before settling back to normal. Used my Kardia, sent EKG to doctor. He immediately put me on Metoprolol Tartrate 25 mg, a beta blocker, twice a day. I have experienced some diarrhea, discomfort in upper chest, feeling very tired and just plain lousy. This lasted for approximately 24 hours. Don't know what medicine caused it. Since then I have felt very good. Xarelto also scares me, especially the bleeding part. I am scheduled for a teeth cleaning tomorrow and wondering if I should cancel my appointment. If I sat bleeding do you think they will be able to stop the bleeding.

    Thanks gor your imput.

  • You need to be off thinners for two days before dentist, is that right?

  • I'm not sure, I will see what my dentist says tomorrow.

  • Good luck! I'm sure you'll be fine!

  • kenmar41 I take Apixaban and have had regular six-monthly dental cleaning since I started it three years ago. I have also had a filling and a large tooth extraction in that time and have not had to stop Apixaban for any of these procedures.

    Do talk to your dentist in advance of your cleaning appointment to get reassurance.

  • Thanks so much, you have made me feel better about it. I will talk to him first.

    Thanks

  • I'm a dentist, and I take Xarelto. Just make your dentist aware that you are on blood thinner. The rule of thumb for dentists in the U.S. is don't interfere with the anticoagulation meds, unless you anticipate the likelihood of significant bleeding.

  • Thankyou for your reply. I did let my dentist know and he assured me there would be no problem during my cleaning and there wasn't.

  • Hi, I am a 45 year old female. I have been on Xarelto for 3 years now. Only side effect for me was periods from hell. I had a endometrial ablation which took care of that. No other problems. My view is that I will take my chances with bleeding before I have another stroke. Good luck.

  • Hi Aspirin will not prevent you having a stroke! Xarelto will. As far as I'm concerned there is no contest. I have been taking this drug for over four years with nor side effects. At least I now go to bed without the worry that I will have a stroke during the night.

  • THANK YOU so much for all your encouraging comments! I feel more confidant about taking this now. I love this group!

  • Thank you all for your answers. I have no problems taking the xarelto, its just the going off it fof an operation that concerned me

  • I agree with pretty much all that's been said here. Most important, as Bob advises, take your Rivaroxaban midway during your meal, to avoid any stomach problems.

  • Does anyone have an opinion on Dronedaron which has been prescribed to my wife after just one attack of AF four months ago.I feel that she is being used as a guinea pig for this new drug instead of bisoprolol as it has quite a few side effects.

    I look forward to your comments.

  • One AF attack is not necessarily a basis for introduction of daily drug therapy. I would seek at least two independent opinions before deciding this is the best option

  • I've been on Xarelto for over a year and a half. After many years/ablations for AF, I ended up having a stroke while on Flecanaide and aspirin. Now have a pace maker, still take Flecanaide but also take Xarelto with dinner. I have been symptom free for almost 2 years. I have no issues with Xarelto- no problem at dentist, fell off my scooter-bled a little-no big deal, also give myself injections for MS every other day. I'm 64. Just do it!

  • I have been on this anticoagulant for three years and had no problems with it. They will take regular blood tests in the beginning to check liver and kidney function then periodically thereafter. I was concerned initially but it's better than worrying about stroke risk.

    I was reduced to 15 mg after about a year for very mildly compromised kidney function and been fine ever since. Go for it better than stroke concerns.

    Best wishes .

  • I have been taking Riveroxaban since my second successful ablation nearly 3 years ago. Have also had 2 new hips and a new knee with no problems at all. The thought of a second knee op does not worry me (though I certainly won't rush to have it) The thought of a stroke a far greater concern though I don't dwell on it. Trust the professionals and avoid stress whenever possible though I know that is easy to say and sometimes difficult to do. I am female and 80 next year - I wish you well.

  • Whether you're on a blood thinner or not is between you and the medics. My GPs routinely prescribe Warfarin for AF but I was about to fly to New Zealand for three months - and to a remote part. I'm sure you've read up on Warfarin and seen it requires a fairly rigorous management process to ensure levels right etc etc.. Also (and I may be corrected on this) most people I know on Warfarin seem to bleed at the drop of a hat if they knock their hand against a table etc..

    So rivaroxaban (Xarelto) is, for me, in the Shakey Isles, a wonderful alternative. Good luck from another 68er!

  • I am 67 and have uncontrolled PAF and had to be cardioverted twice. Since I have been on apixaban and flexanaide I had no incidents since February 2015. I do have a bit of ectopic beats but can live with that. So up to now the medication worked fine with me with no noticeable side effects.

  • Do you take any other drugs or does the PAF disappear after one hour by itself?

  • Hello, Sibelius,

    I am your age with PAF episodes like yours. My cardiologist took me off aspirin about 6 months ago. From being some sort of wonder drug suddenly it wasn't giving me enough cover to prevent a stroke, so I went on to Xarelto (rivaroxiban). I was very dubious to start with but it was either this or Warfarin. Friends of mine on Warfarin did not give it a very good press so I opted for Xarelto because I need some protection. My GP did a blood test to check for clotting, then satisfied with the result started me on this anti-coagulant. He told me I had to go and see him if I had any unexplained bruising and he does a clotting blood test every few months. I take one 20mg tablet with my evening meal and so far, so good.

    I wish I didn't have to take them but common sense tells me I must. Keep asking questions of your consultant, GP, pharmacist etc to reassure you and good luck.

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