AF Association
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Confused afiber

Hi, I was diagnosed with afib two years ago with a single episode, I now take Apixaban and bisoprolol daily.

I had a heart scan at the time and all was well but I haven't seen a Cardiologist at all, I asked my gp if I should have had checks ups and he said no, is this the norm? Put on drugs and left...

51 Replies
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As long as AF has stayed away I would suggest you are fine on a meds regime.

Keep away from hospitals unless necessary there will no doubt be plenty of opportunities as you get older.

Pete

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Thank you for your reply, I hate taking medication but I don't wish to have a stroke either ..

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That is why you are prescribed the Apixaban.

Relax the risk of stroke is with untreated AF not treated AF.

Pete

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I refused medication after my first episode, but was given Metoprolol (a beta blocker like Bisoprolol) to take if it happened again. I was happy to do that. Your medication may, or may not have kept further AF attacks away - who knows. I wouldn't be happy to take daily pills for ever after one attack.

Jean

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I guess the chance if a stroke is why I was told it was for life, who knows of the long term risks of these drugs 😢

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May I ask how old you are?

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I'm 51 now,49 when I was told I had afib.

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It all comes down to your Chads2 score. My two afibs happened when I had a zero score, but as soon as I reached 65, have controlled hypertension, and am female, I got the lovely prescription for a NOAC. 30 days later, got a rectal bleed that filled the toilet. Now I am back on it but am getting a stress test in a couple of days and want the specialist to prescribe apixaban, apparently considered the safest of all the NOACs an warfarin. The list comes in as: apixaban, dibigatran, warfarin and rivorabaxan.....in European studies I have read, the last one is the one LEAST preferred because of its bleeding risks and as one doctor said, the writing is on the wall for that one. Only if the person wants a one-a-day, should it be prescribed. This is why I prefer to read current data rather than what was written even two years ago. So even if you had one afib, and your CHADs is greater than or equal to 1, you get to go on a blood thinner. IF you also have hypertension, I would consider (and I been on for years) either an ACE or ARB inhibitor as they are known to prevent electrical remodelling and help stave off afibs. You can find this information on PubMed.

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Hi, thank you for your reply, ive no idea what a chads2score is as I never actually saw a cardiologist, I was seen by a general doctor who was on call that day, I've never had it really explained to me, basically had to do my own research, that's why I found out about Apixaban, I was put on warfarin at first.

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Hi Kaz :-) this is CHADS and HASBED calculation in one...

tools.acc.org/anticoag/?_ga...

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Many thanks for your help.

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Hell Kazz welcome :-) you need to have a yearly blood test if you are on Apixaban.

See the NICE guidelines. ...

''Blood tests are done to monitor how well the kidney and liver are working. These are usually done once a year, but they may be done more often if the person becomes ill or has renal problems.''

cks.nice.org.uk/anticoagula...

I had one done recently.

According to NICE There are supposed to be 3 monthly reviews if you are on Apixaban. I have symptomatic Paroxysmal Atrial Fibrillation with frequent episodes and take Apixaban and a beta blocker and I just get a yearly check.

I have a reasonable quality of life and don't wish to change my medication so don't feel I need 3 monthly reviews with my GP at this time.

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Thanks for replying, I've not had a blood check for over a year, my gp didn't think it necessary?

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Hi kazg66, it’s a bit late now, but as has been said, you should have had a blood test to check your kidney and liver function prior to taking Apixaban followed by another one 3 months later and then yearly thereafter. I afraid your GP appears to not understand the importance of having this done regularly. If these organs do not function correctly, the drug cannot pass through your body and this is determined by blood tests. I also think you would be well advised to ask for a referral to see preferably an Electrophysiologist (EP), a cardiologist who specialises in arrhythmias.....

patient.info/medicine/apixa...

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Thank you, I asked my gp about seeing a cardiologist but he said there was no need, I had bloods taken today for another matter so I guess it will be checked for everything.

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Wow. I really think it would be good for you to find a Cardiologist. I went through several tests before I was diagnosed with AFIB. And there are medication to take with a healthy heart and adjustments that might need to be made given regular exams. I guess I am not with the norm here in highly encouraging you to get a more thorough exam from someone specializing in heart conditions.

Best of luck to you!

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Try asking to see an Electrophysiologist (EP). They are experts in the electrics of the heart. He can advise if your GP has diagnosed you correctly. I was diagnosed but I don't have afib. The EP checked over the scans etc and I used the kardia machine to see if it was afib. Checking every time I thought I had a problem. If you are concerned then ask to be referred. Xx

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In the UK we can't find cardiologists or any other specialists our doctor refers you if he thinks it's required, but at the end of the day our doctors decide if and when further investigations are required.

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Ahhh. Thanks. We have some situations that are like that in the US as well. I'm not sure if you have a chance to choose your primary doctor. If so, I would encourage you to make sure you have one who is aligned with your goals for your health. It is then not so difficult to get a referral if needed.

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The cardiologist is better determine the need for anticiagulant after one single AF episode

it depends on chad score as mentioned previously but it is really important to see a cardiologist !!

hope you stay A fib free

good luck

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Thank you x

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I have to concur with dar2drm. You should see a cardiologist.

I was diagnosed by ambulance paramedics, confirmed by A&E and supposedly referred to the cardiology department. That referral never did get through the system, and I had to ask my GP to arrange a new referral.

The Cardio-Respiratory Department gave my heart a clean bill of health (eventually, after an additional CT scan) but seemed to ignore the AF event completely, concentrating on the plumbing, I suppose.

It was only after another AF event, that I could prove to my GP with recordings from my Kardia device, that I got referred to an EP at the Lancashire Cardiac Centre. Only after that did I get prescribed Bisoprolol and Apixaban. I am now on a waiting list for an ablation, and still dithering about whether to go through with that. On the other hand, I've had a further session of AF despite the Bisoprolol.

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A&E doctor diagnosed me but was never sent to a cardiologist, I had a heart scan which was fine and a 24 hour monitor which was fine but sent away after an overnight stay with warfarin and bisiprolol, I did my own research and discovered Apixaban which I've been on for just over a year, no further hospital check ups which I find strange..

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Whoever prescribed the apixaban for you should be held responsible for arranging for regular blood tests of your kidney function. I understand that it is a requirement, to check that the drug is not harming you, and should be done once or twice a year. (Timings seem to vary). Apart from that, I believe your experience is about par for the course of AF. If you don't push, no one will help you. You mentioned that you were diagnosed after one session of AF, have you had any others? Some people can have AF and not notice, although I can quickly tell that something is wrong with me.

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I get what I would call a quick palpitation now and again but never had the racing episode again.

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OK kazg66, then there is very little to worry about, as yet, apart from getting your kidney function checked. Be warned that most ways of 'checking your pulse' don't reveal AF as they don't 'see' the beats properly. The best way (apart from ECG or a Kardia) is to check you pulse manually yourself. You cans soon tell if its fast and irregular. I don't see the doctors being likely to be interested if you have not had any of that since your first occurance.

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Hi Kazz :-) how were you diagnosed and who requested a scan .

If you are in the UK, in order to get a scan I understood the request to have one has to be instigated by a cardiologist so even if you haven't seen a cardiologist you probably have one .

I haven't seen a cardiologist in person either but I have one and if I run into difficulties my GP is supposed to contact him. I have seen an arrhythmia nurse who took my details and approved an ECG and Echocardiogram on behalf of a cardiologist.

Everything I have learnt about my condition I have found out for myself . The NICE Guidelines talk about 'Personalised care and information', I haven't receive very much of this and was diagnosed by letter following an ECG . The GP I then saw having been advised in the letter to take an anticoagulant by a faceless cardiologist asked me if I had heard of AF and had a PC , I sad yes and she wrote two words on a piece of paper CHADS and HASBLED and told me to go and look it up.

We don't all live in areas where Cardiologists and EPs are easily accessible, around here only urgent cardiac patients get to see one unless they can afford to pay and go privately.

My advice to you would be read all you can about AF starting with the AF website and if you are in the UK the NICE guidelines..

heartrhythmalliance.org/afa...

nice.org.uk/guidance/cg180/...

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A&E diagnosed, stayed in overnight and sent away with warfarin, I had an outpatient scan a month later which I was told was fine by letter.

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Hi Kaz :-) I posted a link to the NICE guidelines above including the quote about yearly blood tests for Apixaban users . In your position, I would print out the NICE guidelines and take them to your GP and ask for a yearly blood test to check your kidneys and liver are working ok.

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I will do and thank you again for your help.

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I too research everything.

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Hi ! I think that if you are on blood thinners then you should have blood tests every six months ! But like alot of things NHS if you don't ask you don't get !

Andy

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Absolutely, badcenough you have to ask to be checked out, thanks for your reply.

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you need to have renal function checked as if there are problems they will reduce the dose of NOAC to ensure not too much is being retained

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Thank you, advice appreciated.

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I was diagnosed with paroxysmal AF 9 months ago but was unable to take the smallest dose of Bisoprolol daily as it brought my heart rate down too low. I was given Apixaban only after I found the Rivaroxiban originally prescribed had dreadful side effects. An echocardiogram at a hospital showed my heart was fine and I assumed I would see a cardiologist while I was there but I only got to see one some months later after asking my GP. At that point I did not see my consultant though I have now, since I eventually went to see an EP cardiologist, privately. You are fortunate not to have had any further episodes and to feel comfortable on the medication but I think you might have to persist with your GP if you wish to see someone who will know more about your condition than he or she can. I now seem to get regular appointments with the cardiologist consultant and his team. Good Luck!

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What are the dreadful side effects of rivaroxoban? I have been taking it for 5 years with no side effects. It is necessary to stop it for two or three days for surgical or dental treatments. My brother also takes Xarelto for unprovoked clots, also trouble free. Melanoma 2

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Apixaban seems fine with me.

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It's fine if it works for you but it upset my stomach badly so they gave me apixaban instead. It's fine if it works for you but as we have established here, everyone is different and also dosages are based on the average male and I am female and never having been on regular medication before, I don't tend to get on with it.

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I thought I had already replied but it really didn't agree with my stomach causing diarhea

(one of the known commo side effects). If you are on it with no problems I guess that's fine as it is for lots of people. We are al very different and I do wish that would be accepted so we cold all receive treatemt and medications that are suitable for us as individuals.

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Thank you Sandibee. Sorry Xarelto did not agree with you, as you say, we are all different. It!s a bit scary when one reads about horrendous side effects. Guess I am just lucky in this respect. Good luck with your AF. Melanoma2

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Thanks for your reply..good luck with your afib.

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Meant to ask, are there many different types of afib, I will need to find out what I have, it's poor treatment when Ive never been informed.. Thanks again.

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Hi I found out last week I’m in permanent af ?? Had one cv but failed after 3 days ! Don’t know what’s next for me !!!! I only found out in November last year !!!

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Hope you get it sorted soon must be awful for you.

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Thank you and hope you get sorted too !!!!

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Permanent AF just means you and your doctor have agreed not to try and treat to return to normal rhythm. If you want to explore options it is persistent AF and you should ask what further treatment is possible. Do see an EP to discuss in that case.

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Thank you for your comments but can you live in permanent af ? Without treatment just tablets? Or is it better to try to get back into NSR ?

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Lots of people do because they don’t have many symptoms. If you are very symptomatic then tablets or ablation are usually discussed. It’s very individual. I have in frequent episodes which are symptomatic and only take anticoagulants. Others take meds which control things well. Others have ablation. You do need individual advice about your personal situation

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Thank you !!!

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I have paroxysmal which means it only happens occasionally and stops after a short while. They treat everyone as if they had persistent or permanent AF, saying that is what you will have eventually rather than attempting to stop it getting any worse when it is first diagnosed as would happen with any other medical problem! Good luck with pushing to see an EP and hope that helps. Try not to worry though I know from my own experience that is difficult!

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