Flecainide

Hello,

I am just reading through my Bunff from the Patients day conference....ECG changes...Because of the potential risk of drug toxicity,patients who are taking Flecainide should have an ECG recording every 6 months .also all drugs should be reviewed every 6 months...

Does this happen are patients offered this facility?

I have been on Flecainide 18 months now ,only had ECG when diagnosed...

C.

17 Replies

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  • Dear Caromia,

    VERY interested to read about Flecainide. I have been on this for 2 years now and neither my GP or consultant has ever mentioned a 6 monthly ECG. I had been feeling well on this drug, however, I had another trip to A&E 2 weeks ago due to very rapid and irregular heartbeat, blood pressure through the roof and feeling unwell. I was advised to let my GP check my blood pressure weekly for the next month but no mention from the A&E doc about a 6 monthly check. It makes you wonder. While I am on here does anyone know if there is a link between being overweight and AF. GP says no but I'm not so sure. Thanks, Sarniacherie.

  • Hi, my husband has PAF and had a bad reaction to flecainide which resulted in him being taken off all drugs. We therefore asked a friend of a friend who is a cardiologist currently doing research into AF for advice and he said that there is more of a link between weight and AF than was previously thought. This is new research being done in Australia and, therefore, probably not known by your GP. My husband was advised to lose weight (he's only slightly overweight) and hopefully that will help with his symptoms

  • About 20 years ago there was a clinical trial set up to assess the effectiveness of a new antiarrhythmic drug. The trial had to be abandoned prematurely for ethical reasons because the drug was found to be increasing mortality. Subsequent research found that the drug was dangerous to patients with ischaemic heart disease, but completely safe for those with lone AF in an otherwise healthy heart.

    That drug was Flecainide.

    It follows then, that if you have no ischaemia and been prescribed Flecainide safely, you will need regular checkups to ensure that it is still safe and that you have not subsequently developed ischaemia.

    Latest (2011) review here: europace.oxfordjournals.org...

    Quote:

    " The increased mortality seen in patients treated with flecainide in the Cardiac Arrhythmia Suppression Trial (CAST) study, published in 1991, still deters many clinicians from using flecainide, denying many new AF patients a valuable treatment option. There is now a body of evidence that clearly demonstrates that flecainide has a favourable safety profile in AF patients without significant left ventricular disease or coronary heart disease. As a result of this evidence, flecainide is now recommended as one of the first-line treatment options for restoring and maintaining SR in patients with AF under current treatment guidelines.

    One of the most difficult issues is that patients may develop coronary disease, ischaemia and/or structural heart disease while receiving chronic flecainide. Patients who are effectively treated but who have, for example, non-significant CAD as detected by CT angiogram, may continue flecainide but should be instructed about warning symptoms, including unexplained fatigue, new or increased chest pain, or syncope. Physicians should perform an exercise test and regular ECGs, and patients should monitor their symptoms and report any problems. Most importantly, background diseases such as hypertension and coronary disease should be addressed aggressively with preventative therapy once detected. Patients successfully treated with flecainide but who develop vascular disease may continue flecainide treatment if these precautions are followed. "

    There is a note on my prescription about a review in twelve months, but I don't know what that will involve. I've only been on it for 5 months so far, but nobody has mentioned this to me either, I only discovered it when I was leafing through a copy of Goldacres "Bad Pharma" in W.H.Smiths.

    amazon.co.uk/Bad-Pharma-How...

  • Hi likened to the "egg and the chicken" syndrome!!!

    Alleviates the symptoms of AF but could possibly worsen the condition of the heart...

    I am being to realize why Ablation is preferable to drugs...C

  • I too have wondered about this. The twelve month review is a blanket affair for all prescription drugs. I rang to arrange mine and was told it could be done at my next appt. When I explained I don't visit GP regularly, I was given an appt with a GP who was "doing them all" He had side effects of flecainide on screen and was only concerned that I was compliant. As I'd had an A&E visit a couple of months before I was not too concerned. I think the review isa tick box exercise unless you make it otherwise. On another occasion I said to my GP once that I knew flecainide can cause other arrhythmias and he replied "I disagree"

  • Hi,

    This goes to show arrogance and some GP's expect there patients to comply or acquiesce without question.....I have asked my GO do l have a secret sign on my notes indicating that I am "Tricky" C

  • I am sure you don't have such a note Caromia, after all you have a right to see those records, and they would hate the fallout if you complained.

    However I do understand what you mean, my Cardio (registrar sometimes) loves informed patients, loves to be questioned on drugs and potential surgical solutions, and is more than willing to even talk about the future and what research is being done.

    On the other hand, my GP (all of them I never see the same one twice) hates being told that the automatic blood pressure machine he/she has wrapped round my arm will not work, almost tuts when he/she has to actually take my pulse and then raises their eyebrows when Yes surprise surprise (they never read the notes first) I am in A Fib. And as for actually questioning about drugs, or heaven forbid doing a little research prior to the visit. you'd think I was an alien from outer space, how dare I question their godlike judgment, or ask questions about side effects and interactions with other drugs I am on?

    Yes of course I have thought about changing, but honestly I doubt that I will find any GP with a different attitude, it seems to be just part of trying to be a generalist and not wanting to actually admit any gaps in the knowledge, which I understand, but jeez there must be a way they can just say "I'm not an expert" and then actually listen?

    Take care

    Ian

  • Hi Ian,

    How can you be in permanent AF and not feel anything...Not even a flicker...

    l would just like to know if you don't mind surely your heart must be racing away on full throttle and yet you don't feel it...Carol....

  • Hi Carol

    No sense no feeling :)

    No to be serious it's not like when you get an A Fib attack and you heart feels like it going to jump out of your chest, my resting pulse rate is around 75 - 80 and at that rate my heart beat is like a bag of weasels fighting, completely irregular not even regularly regular, but it's been like that for a long time now, so it doesn't feel any different to normal and everyday.

    So no full throttle, more like a burping and stuttering and yes I am completely used to it and don't even notice it 99% of the time.

    You should have felt my pulse weekend before last and you would have understood :)

    Ian

  • Did not want to appear to be to familiar,Carol...

  • I've had the recent experience of my GP saying " I don't really know so much about this, so I'm referring you." Problem there was waiting another 3 months or so for an appointment whilst the condition was getting worse. The biggest moan I have is that unless you have a bit of knowledge of the condition your seeking help with, is the seemingly unwillingness to explain fully or discuss options. Maybe it's just assumed you know all this, or could it be the full waiting room?

  • “….after all you have a right to see those records….”

    There is a clause in the legislation which entitles them to withhold anything that they don’t want you to see on the grounds that it’s “not in your interest” to see it. I’ve checked with lawyers and the Information Commissioner, and there’s no independent right of appeal to anyone who can decide whether they’re withholding information in your interest or in their own.

    If they want, they can also insist that you specify explicitly which document you want to see, and find out for yourself which department holds it. When I wrote to say that it’s not my job to guess what records they have or where they’re kept, all I got was a letter from the NHS lawyers telling me that’s precisely what I have to do.

    Furthermore, if you check the Patients Association websites you will see that any errors you find on your record will not be corrected, they remain there for life. Witness the Biggleswade woman who was taken away in handcuffs by the Police last December for insisting that the errors on her record be corrected.

    When I went to collect some of my records, the receptionist had trouble finding them on the shelf. At one point she turned to the computer, looked me up, and said “Is this something to do with all the complaints you’ve been making?” Not only is it obvious I’ve been blacked as a troublemaker, but since there’s nothing to that effect in any of the paperwork I’ve been given, it’s also obvious that they’re keeping a two tier record system, with a separate system for the stuff they don’t want you to see. Is that section hidden from the Information Commission too?

    When I was referred for an ablation, it was at a hospital I’ve never been to before. From the moment I walked in the door they smirked at each other as I got the obsequious fawning Uriah Heep act; “Yes Sir, No Sir, Three bags full Sir, How lovely it is to meet you Sir”. Evidently my relationship with them had been poisoned by the referral letter before I even walked through the door.

    Since the doctor called me a neurotic who can’t cope with conflicting information I’ve had snipes from the nurses about that too, so that must have also gone on my record. About 18 months ago I nearly fainted whilst having a blood sample taken because the nurse stuck the needle through the nerve in my arm, and then kept going even after I yelled out. That seems to have got me labelled as a phobic who’s frightened of needles.

    This lack of transparency is at the root of much that is wrong with the NHS. All the well-meaning measures such as Ann Clwyds current campaign will keep failing because the NHS are answerable to nobody, and can write what they like about you without any challenge whatsoever.

  • Ha, we probably all do Caromia. GPs don't like questions, in my experience, or at least the ones I've dealt with. I understood there was a link between obesity and AF, which is why I'm on a diet... I would be very interested in links to any research.

  • I have been on Flecainide for half my life - 15 years, I take 200 - 300 mg at night. I have yearly checkups, the only sides I get is dizziness or what can only be described as confusion in the morning.

    I have check ups once a year. I have never had a toxicity test. Should I be tested, I seem to be OK on it, maybe I have just got used to it.

  • I have been on Flecainide for 4 years with absolutely no problems, I am reviewed every 6 months, but I have not had an ECG in the surgery since I was put on Flecainide by the John Radcliffe. It is very effective in dealing with residual SVT following my ablation. I am aware of the increased mortality concerns, but when this was raised at a heart rhythm conference a few years back, the reply was that the study was done mainly in an elderly patient cohort, and provided you have not had a heart attack or other cause of atrial scarring, and provided you pass an exercise test, then Flacainide is a safe and effective drug. Certainly it is for me.

  • I have been on and off flecainide since 1992 I had a heart attack in 2002 and was put back on flecainide then I went very tachycardia and saw a cardiologuist who changed me to digoxin and sotalol. I have only had one ECG at my doctors.

  • I am starting Flecainide tomorrow after being taken off Dronedarone as PAF is returning, but i was put on Flecainide once before about 4 years ago and it made me really unwell so i am a little nervous but have been told to have an ECG five days after starting tablets to make sure all is ok, although i feel really unwell today we shall see how they work.

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