AF Association

nervous about taking Rivaroxaban

dizzielizzie 1 Because of my Paroxysmal Afib and the fact that I am a woman and I am 65, I have now been prescribed the anti-coagulant Xarelto. I have read the huge fold out sheet of patient advice that comes with it and I am nervous about taking it. Anyone got good experiences to share about it.

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It's pretty low in side effects apart from the obvious bleeding risk. The main thing is it reduces your risk of a stroke by 5 times and you will have a significant risk of stroke with your age and paf. Maybe you have other factors to increase your risk as well such as blood pressure, cholesterol, diabetes ...........

There are stories on here of people with af who didn't take an anticoagulant and had a major stroke, which probably would have been prevented.

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Thanks for the reassurance Goldfish. I don't have any any other factors ( which I know about!) which would predispose me to a stroke--only the PAF, and I think that is why I have been slow to accept that I need an anti-coagulant. However, I think I have to bite the bullet now and take it.

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Been on it since ths first af back on july 2015..

Havent had any problems with it.

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Hi,

Have been on it nearly two years and no concerns.

Wendi

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I am 74 and was started on Rivaroxaban after my pacemaker check in April showed frequent episodes of AF. Like yourself I was very nervous about taking it however, apart from any bleeds taking longer to stop, I have had no side effects to speak of.

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No problems or side effects

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I am 53, got diagnosed AF nearly 3 years ago now. After being discharged from hospital I was immediately put on Warfarin, as a "temporary" solution for thinning my blood, After 2 years I demanded something else than rat poison and was put on Rivaroxaban. a few tests to ensure it was suitable, which it was, and now I don't have to have regular hospital trips for INR plus I can now eat super foods.

In other words, it's one of the few drugs I'm on that I'm very happy with.

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I was very worried indeed about taking an anticoagulant, full of apprehension. I felt it took me away from normality and I was very resentful, fearing dire things and convinced a major and terminal bleed would swiftly come my way. It didn't happen and I have become complacent.

I took large quantities of Warfarin for a couple of years but was forever outside or on the fringes of the therapeutic range. I switched to Xarelto / Rivaroxaban and it has been bliss in comparison - so simple and uncomplicated, with a sense of constant protection from stroke. I've had no problems at all in the 18 months I've been taking it.

I'm not much bothered by the lack of an antidote. Anyone can die from seriously significant bleeding, be they on a NOAC, Warfarin or nothing at all.

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Thanks Rellim 296. I am just like you. I get concerned about what might happen when I read the patient advice which comes with meds, but I shouldn't let it stop me from taking it when I know that it could prevent a stroke. Do you experience any digestive problems taking Rivaroxiban?

Did you need a check up after 6 months or was it just a case of start taking it and that's it forever, no need to come back?

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No,. I don't have any digestive problems. I always take Rivaroxaban with food. I used to take it with breakfast and that suited me well but when I had an ablation I was told not to take it on the day and took it in the evening afterwards so now I'm taking it with my evening meal. I find this less convenient, especially if out for dinner.

I have an annual blood test for liver / kidney function. No problems with the two that I have had so far.

I have to say that many times every day (and especially when I am sinking my teeth into something that doesn't get on well with warfarin) I think how lucky I am to have a weapon against strokes that doesn't impact on my freedom of choice and enjoyment of life. I also feel it would be far better to come to a sudden end from lack of coagulation than enduring a lingering, miserable and debilitated existence.

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Thanks for the repy Rellim 269. Glad you're doing so well on it.

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I'm very much happier than I used to be. I'm also a few years older so my risk of stroke has gone up and anticoagulation feels more relevant than it used to.

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Oh dont worry. i have been taking it for 18 months now. No problems at all. Much better than warfarin. I did try a different noac but made me sick. Rivaroxaban is fine. Only prob not allowed to take ibuprofen but I do sometimes after food. No probs at all

Best of luck Just learn to pace yourself with the af and try the magnesium see Sanjay Gupta seems to be really good for me have had af for 18 years

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Icenae, did you start with 20 mg straight away? That's what my GP has given me, but it's not what the patient info leaflet says should happen!

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Yes I did. I queried it with doc and pharmacist and both said that is usual. So I took it and havent had any problems.

But have a chat with your pharmacist too to put your mind at rest.

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If you have AF then you shouldn't be taking ibuprofen of any NSAIDS anyway.

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Whys that? Never been told not to take nsaids because of af. Only because of anticoags in case of stomach bleed. My cardio reluctantly allows me some occasionally due to severe arthritis. And if I need them for percardial fluid caused by inflammation.

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The fact that your cardiologist reluctantly allows you to take them is one very good reason.

Studies were undertaken in at least Denmark and the Netherlands which showed that ibuprofen is a cause of AF and an exacurbator. Our illustrious BobD is frequently saying that.

The two top most likely things that caused my AF are ibuprofen which I probably took say 25% of the time for 30 years and adrenaline.

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Agree very strongly with PeterWh - I took Ibuprofen for backache for donkeys years and wonder if it was the cause of my AF. NSAID's need to be used with close medical supervision if one is anti-coagulated because of increased risk of bleeds as you say.

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Interesting. If I resort to ibuprofen for back I will watch out for af episodes. I know it was linked to heart attacks. Tbh i take it so infrequently now, I wont worry too much. When my back is in bad spasm Its the only thing that helps. I have had af and a pacemaker for 16 years + 3 ablations so take it all in my stride.

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Try a heat pack. I have two. One is basically a wheat pack or something similar that I warm in a microwave. The other is a liquid one that you boil in a pan so that it's liquid. Allow it to cool and then when you want it click the clicker in the liquid and it starts the thermo reaction and warms up.

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Heat definitelyhelps I have a cherry stone bag and have invested in an electric heat pad. I think my recent bad spasm was sparked off by cardio versions during a complicated ablation.

Luckily much better now. Can stand up straight by midday 🙂

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NSAIDs also increase your risk of stroke. I had TIA a year ago and GP told me not to take them

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NSAIDs are also an AF trigger/ exacabutor.

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Again, I have been on Rivaroxaban for two years without any side effects. So no need to worry.

Best wishes Pam

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Pam, have you had any problems with indigestion or reflux? I have IBS and hiatus hernia, which cause digestive problems. I asked the GP if rivaroxaban caused digestive problems and all he said was lots of meds do that, which is true unfortunately. Will just have to wait and see. Dizzielizzie1

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Dear Lizzie,

Have had problems with indigestion for many years following chemotherapy. Was put on lanzoprazole for it so no digestive issues. I also take lots of drugs for rheumatoid arthritis which I have had for over 40 years and suffer from unwanted side effects from them, but the Rivaroxaban has not caused any problems. Better than the alternative Warfarin in my opinion.

Regards Pam

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Hi. My GP put me on lanzoprozole after 4days when i started Rivaroxaban, I have gut problems and started to have indigestion. They worked straight away ..touch wood.. 2 weeks on and all fine, can eat my green veg again and look forward to cranberry sauce at xmas.

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Hi

Question why is it ?

if u are over 65 u are prescribed anti-cougs and if u are under u are not

Thats food for thought here 😳

I am 58 and i had one episode 6. Months ago and was not offered anti coags.. echo normal

You need to question around the whys and then make uour descision which is best for uo

Its your body u need to research question and think whats best for you

Good luck 🌺

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If you want them then they will prescribe especially if you say that you are very scared of a stroke - which is why I am assuming that you are making the comment. the basis is the CHADSVAC2 scoring but that is a guideline. Do you have high BP?

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The GP I saw yesterday said that my Chadsvacscore was 2 and as such I should be on acticoagulation due to my PAF. Three other doctors have said the same and as my PAF episodes seem to be getting longer I think I should take their advice now, as the last thing I want is to have a stroke.

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My view is definitely. Even if score was only 1 then in your position I would and quite probably even if zero.

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With a CHA₂DS₂-VASc score of zero I think the evidence suggests that the risk from anticoagulation is actually higher than the risk without.

Unfortunately the estimates of benefit from anticoagulation with the different scores have never been tested with randomised controlled clinical trials which is especially difficult for those with scores of one and two where the benefit may be rather marginal or even negative. In the RCTs that have been published on anticoagulation in AF, the benefits are inevitably dominated by the effects of treatment in the higher risk groups. The benefit in the lower risk groups has been estimated by logical deduction but logic has been proven wrong in many medical questions and is no substitute for RCT evidence.

Even more unfortunately it is rather unlikely that the necessary trials will ever be done as the current guidelines suit the pharmaceutical industry very well and there is clearly no commercial incentive to undertake a trial which might show that the lower risk groups are NOT benefitting from anticoagulation.

It is important to keep in mind that if you have a score of 1 the risks either way are very low.

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I'd rather take anti coag than have a stroke. As a Nurse myself I have nursed people with many different conditions, but stroke is my biggest fear !

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Jamila. Perhaps they think the benefit to be gained may not be worth the bleed risk as you have only had 1 episode 6 months ago.

I wasn,t put onto warfarin for a couple of years until the episodes were more frequent weekly then daily.

I was about 50 then. Took it for about 10 years. I had a few years off coags after my 2nd ablation worked for a couple of years and was put onto a noac 18 months ago when episodes were creeping back to daily. I am 65 now.

Have you read/ seen any of Sanjay Guptas facebook posts (and on you tube ) about the benefits of magnesium. Seems to be very benficial.

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Yes i have briefly looked at his utube

I take magnisuim daily

When that epsoide happened i was under stress with work studying looking after a famiky somwthjng had to give 🌺

It was a blesssing in disguise because it made me reflection of my lifestyle

So i stopped all caffeine teas coffee all sugars

And put i in my body anti-inflammatory anti-oxidants

To help heal my body

Its an awful problem and can make us feel so down at times

Heres hoping that the afib stays away 🌺

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Hi I was just about to say exactly the same as goldfish. And don't forget that by taking this instead of rat poison where you need blood tests to keep a check on your blood. This is a much better option

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It's really not a big deal. Just take it. Everyone here who has responded recommends you should and the evidence in favour of benefit is clear.

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I have been taking Rivaroxaban for some time now, no problems at all, I feel quite safe.

Warfarin did not work out for me, could not get my NiR in spec which was a worry. Do not worry about all that advice that comes with each pack, they have to warn us about most things which are not necessarily any thing to worry about !

I just get on with my life, in my case much safer then before.

I wish you well.

Christo.

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I've been taking it for months now with no particular problem. No excessive bruising or anything. Have t be careful cutting myself, and to let dentists know. I keep the warning card in my wallet, and inside it a piece of paper with a list of my other meds, just in case.

The thing to keep in mind is, while the risk of dangerous bleeding in a serious accident is increased, this is much less likely than a blood clot caused by your a-fib.

Just don't go around falling into greenhouses or jumping through panes of glass.

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Hi Paddington,it was the warning card inside the medicine box which made me nervous but I've got over that. Might buy a special medic alert bracelet. Will tell husband that he has to prepare all veg from now on as I can't handle sharp knives any more. Can't see him falling for that!! Glad you're doing well on the Rivaroxaban.

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Me too. Bit frightening, but so far so good. No problems.

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Icenae, have you put on weight taking Rivoroxaban. I read somewhere that some people have put on quite a lot of weight .

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No I dont think so. Have been taking pregabalen too so that would be a bigger culprit. Or the bisoprolol.

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I often buy prepared cubes now of things with treacherously challenging skins, like swede or butternut squash. I fondly imagine that the original vegetables were odd shapes or slightly damaged and I am cutting down on waste by so doing.

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Seriously no need to do that.

Yes I cut my self occasionally with knives or tools or scratch myself and it bleeds but if that's a minute or so longer then that's tops. I have some stero strips which allow you to pull the skin together tightly in the event of a slightly deeper cut rather than a scratch.

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In December 20015 my Afib was discovered after I had a very slight stroke (that fortunately left no lingering effects). I was prescribed and have been taking Rivaroxaban for almost a year now with no problems. I do realize however that everyone is different and some people will have reactions to a drug but....if you have Afib you really should be on some kind anti-coagulant to prevent a stroke from happening. I was 64 years old and in excellent health before the stroke occurred.

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You really don't need to avoid knives when on NOACS, I'm on edoxoban after rivoroxiban , pradaxa and apixaban gave me terrible side effects.

I cut myself doing diy when taking rivoroxiban and again tonight taking apixaban. I wouldn't say that the bleeding is much worse than being on no anticoagulant. I also had a tooth extracted whilst on pradaxa, that took about 20 minutes to stop, but I didn't bleed to death .

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Hi dizzielizzie1, I was exactly the same as you about going on to Rivaroxaban (Xarelto),I have had PAF since my early 40's which was controlled most of the time with Flecainide, as I got older and was in a stressful job my Af became more frequent, when I reached 65 my gp wanted me to start an noac, I declined as I was so scared!! After a couple of bad lengthy episodes Gp advised again! I am 67, started Rivaroxaban 20mg in June this year and think I am ok, I had a blood test a few weeks ago which seemed ok. I have since developed tachycardia and flutter and awaiting my appointment with EP 29th Nov. I feel more reassured now I got used to the idea and I am sure you will be fine, I don't want a stroke and hope this keeps me safe. The people on this site were very supportive of me at the time! Good luck if you decide to try it and keep us informed.

carol

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Hi Carol, for the past few days I have had problems with my stomach. I have had gastro issues ( IBS and hiatus hernia) for almost 40 years, so I am going to wait until my stomach feels better then I will start the Rivaroxiban. Interesting that you had a blood test about 4 months after starting on NOAC. My GP never mentioned anything about needing to have a blood test.

Everyone has been so supportive on this site. Only another Afib sufferer understands what it is like to have it. keep well.

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All NOACs require a test. I thought varies from 1 to 3 then some 6 months after starting then annually.

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Thanks Peter--- I will probably have to ask for a test.

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caznear68--Sorry called you CAROL by mistake!

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no probs I am Carol ,thanks anyway

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My GP gave me all the information on Warfarin versus one of the new anticoagulants and let me decide which one I wanted to take for my PAF, I chose warfarin.

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My GP wouldn't discuss or propose when I was diagnosed two years ago since she said that almost certainly one of the NOACs was best but she felt that the EP was the one to decide which was the most appropriate taking into consideration my conditions and sssessments.

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I think the cardiologist I saw following diagnosis would have suggested NOAC, but I had already started on warfarin, my GP said if I wish to change at anytime I can. Most people seem to be a tad intimidated by Doctors, don't be , believe me they do make mistakes. They failed to anticoagulate me when I presented at A&E with AF. They missed the fact that I was previous TIA, and scored 4 on the CHAD score, they obviously hadn't read my notes. They discharged me with wrong instructions about ' pill in the pocket ' bisoprolol aswell, which I sorted out myself after ringing first the pharmacy dept at the hospital who believe it Or not couldn't help me, so I then had to ring cardiac ward! I'm still toying with the idea of putting a complaint in. It's only because I'm ' in the know' so to speak that I was able to sort these things out! Poor Joe Public !

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I agree!!!

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Hi there, I was prescribed it and had not very good experience on it… Arthritic pain in the legs, nausea, lethargy and suicidal thoughts!

Now I take nattokinaise I have an episode - I am 63 with no other health issues .

I wish you well it is a difficult journey.

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