Should I take Rivaroxaban and how long? - Atrial Fibrillati...

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Should I take Rivaroxaban and how long?

FiveMilesSouth profile image
24 Replies

I had AFib nonstop for about three plus weeks end of last year. Was a first episode of any significance. Three 30-60 second ones before though steady beats. This long period went away after a few days on Adizem. Had to wait till April to see Cardiologist who said AFib is for life, it doesn’t go away, it gets worse with age, and I must take blood thinner for life. My GP said I was low risk being 62 female. Cardiologist said No you’re over 60! Take it!

I haven’t yet taken it. I haven’t had AFib since early Jan. My echocardiogram was clear. No result yet from 24 hour ECG as there is a backlog.

MY QUESTIONS

Do I really need to take it if I am not experiencing AFib?

Can I just take it for a few days when I am making long trips like going to the States in a week when I might get tired which could trigger the AFib?

If I am having aFib and don’t realise it, can’t I have a longer ECG to track this rather than commit to Rivaroxaban 20mg for life?

I’m unsettled and worried. Don’t want a stroke. Don’t want to deal with side effects of blood thinner.

Your opinions and advice welcome!

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24 Replies
CDreamer profile image
CDreamer

For me it’s a no brainier - take the anti-coagulants. Personally I have absolutely no side effects on Apixaban. Just make sure you take Rivaroxaban with a substantial meal 500 calories containing protein and fat.

If you have AF you will have an increased risk of stroke although there is some debate as to the statistical significance and as you have encountered, differences of medical opinion but who is the specialist here - your cardiologist or your GP? Ultimately it is your body, your choice but please base your choice on information and research rather than fear and bias.

Do your own research and then ask yourself the question - will I feel better taking or not taking? Meditate on it and let your inner knowing answer what is right for you.

There is a study conducted in North of England that showed a significant lower number of strokes in the population where GPs were more likely to prescribe anti-coagulants to patients with AF, even if they had only had one very short episode.

Go to the AFA website and look at the great lengths they go to to publicise the importance of taking anti-coagulants - they do it for a good reason backed by good research & clinical evidence - not opinion.

Best wishes from a rather biased CD who already had one TIA when not on anti-coagulants.

FiveMilesSouth profile image
FiveMilesSouth in reply toCDreamer

Thanks for such a thoughtful response. I have spoken to GP who was a much better conversational partner than cardiologist. I also read up on AFib and anticoagulants in the BMJ. Will read other comments now but I think I am clearer in what I am going to do. Your opinions and experience all matters.

Lesleyray profile image
Lesleyray

Hi, I’ve been on it for 3 months advised by my cardiologist as I had a hospital spell in January, I also take Flecainde 50mg twice a day and hardly have a flutter now, it’s absolutely brilliant, to be on the safe side I would certainly recommend taking them

FiveMilesSouth profile image
FiveMilesSouth in reply toLesleyray

Hi Lesley. I feel reassured hearing your story. Thanks! 😀

daveeb profile image
daveeb

I always do that as the GP, cardiologist, or EP tells me, although it wasn't heart problems that was the start of taking blood thinners/anticoagulants but a severe brain injury, way back in 1985. At first I was given aspirin, but as most of us of the UK know that is frowned on by NICE. Then I was given Clopidogeral that didn't seem to have any impact, good or bad, Finally in 2013, when PAF kicked in, I was given Dabigatran Etexilate, which I have been using since. I had 2 TIAs whilst taking the aspirin and Clopidogeral. I don't know if I've had any more TIAs for some years, because of epilepsy. I don't think these meds are right, but the old trial and error will find the right ones. Not being a doctor, I can't say anything, only if they are causing problems. That's why I trust my doctors to tell me what to do. However, they can't always be right, but you can always ask for a second opinion, or change your doctor. Keep faith and good luck. Take care. Dave.

FiveMilesSouth profile image
FiveMilesSouth in reply todaveeb

Yeah. I see that. Thank you for taking the time to share your experiences with me. Much appreicated.

Bagrat profile image
Bagrat

My last overt episode of AF was in 2013 during a viral illness. I take Flecainide and Apixaban and having seen both parents suffer several strokes and die (adopted by the way so no genetic connection) I have no intention of stopping unless my HASBLED (bleeding risk) score changes ( I'm 75)

FiveMilesSouth profile image
FiveMilesSouth in reply toBagrat

Thanks Bagrat. I think I’m going with Apixaban.

If you have ever experienced AF, Stroke risk when you are in AF is no different to risk if you are not.

If you score 0 on your Chads2vasc then you do not need to take an AC, if you score 1 you should consider is, 2 or more you take one

FiveMilesSouth profile image
FiveMilesSouth in reply to

Yes I quite agree. But I’ve been scared now and it’s hard returning to a not scared state. For me it is all about the side effects of the anticoagulant.

CDreamer profile image
CDreamer in reply toFiveMilesSouth

That’s the trouble - we make our decisions based on fears which often come from other people’s fears. BobD gave a very succinct summary of this phenomena a few months ago - Patients are scared of strokes whilst Doctors (GPs especially) are scared of bleeds.

Exactly what affects scare you?

FiveMilesSouth profile image
FiveMilesSouth in reply toCDreamer

I think what scares me is making a bad decision. If something goes wrong and I have a stroke , I will be angry that I never listened to the expert cardiologist. He emphasised the majority of stroke patients in the U.K. have strokes as a result of afib. I can hear and read that there are many complex factors to consider but I don’t really feel qualified to asses the risks. My GPS feel I am low risk so aren’t bothered if I take it or not.

CDreamer profile image
CDreamer in reply toFiveMilesSouth

This may help you. You can do your own risk score from here. clincalc.com/cardiology/str...

Score 0 = you probably will not have an increased risk of stroke than the average population risk 1= slight increased risk but would be optional whilst +2= increased risk of stroke and you really should be taking anti-coagulants.

So being female and over 65 - I would be higher risk having had AF.

FiveMilesSouth profile image
FiveMilesSouth in reply toCDreamer

Thanks. I only score one for being female. Im still going to take the Apixaban and review in a few months. Still awaiting results of 24 hour ECG from a few weeks ago. Thanks for your support.

Auriculaire profile image
Auriculaire

I resisted taking an anticoagulant though neither my gp nor my cardiologist pressed me despite being female and just over 65 . The first one I took was Pradaxa and I had bad side effects straight away so I just stopped. Cardiologist was ok with it! A year later I had a suspected TIA though luckily brain scan showed no damage. I had not had an attack of afib for six months. GP said no choice now and started me on Apixaban. Cardiologist agreed when I saw him. I feel more protected though I hate taking meds. I don't want a full blown stroke and feel very lucky that tye TIA was so mild.

in reply toAuriculaire

I feel as you do but I take my pill and try not to think about it. Im 66, started at 65.

FiveMilesSouth profile image
FiveMilesSouth in reply toAuriculaire

Yes I am heading for the pill... thanks for sharing your experience. It is helpful to hear what others have considered and how things play out. It seems impossible to predict for sure so I am going with the more tolerable longer term solution - subject to how I get in with the anticoagulant. Apixaban.

RickyM profile image
RickyM

Keep taking the Rivaroxaban and don't worry about the 'substantial meal'. The AFA and consultants say a biscuit is sufficient to take with your medication.

FiveMilesSouth profile image
FiveMilesSouth in reply toRickyM

😀 I asked the GP today if I should rather start on Apixaban as risk of gastrointestinal bleed lower than Riv. My stomach doesn’t tolerate ibuprofen etc well.

CDreamer profile image
CDreamer in reply toRickyM

Tell that to my friend who ended up with high liver enzymes because she was only taking with a biscuit..........

RickyM profile image
RickyM in reply toCDreamer

Tell the AFA and their consultants.

Franny50 profile image
Franny50

Here is U.S. electrophysiologist Dr. John Day on the subject of lifetime anticoagulation, esp. based on chads-vast scoring for women. It is food for thought, IMO.

drjohnday.com/13-reasons-wh...

Can anybody link to a straightforward NNT (number needed to treat) study on Rivaroxaban for afib treatment?

FiveMilesSouth profile image
FiveMilesSouth in reply toFranny50

Thanks Franny50 for the link and the question. I read the Lòpez et al systematic review of anticoagulants for AFib (2017) and then my GP said well that review was already two years ago and there will be more evidence/studies emerge in the future that potentially will contradict the current evidence. Dr John Day’s article sounds like it raises important points and questions. He doesn’t offer a statistical critique. But I agree with there being an apparent gap in the knowledge available and that the medication regime is a response we are used to. I do think that if I could get my sleep sorted out I may get further away from AFib and that it may not return. But for now, I don’t feel confident to not risk taking an anticoagulant so as of next Tuesday I plan to start taking Apixaban for a while. In an ideal world I would have a heart monitor which would monitor for AFib and all the other heart functioning stuff so I would have more detailed advice on which to make a more informed decision. *Feels* unnecessary to take Apixaban BUT also *feels* a sensible thing to do...

MtLSteven profile image
MtLSteven

FYI to all. Here in Norwich the CCG are moving patients on Rivaroxaban to Edoxaban. They say costs are lower and the effects no different.

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