Another newbe

Hi all, I'm new and very scared. Been in and out of AF for over ten years but it never got picked up on ECG because of this. A few months ago it was formally diagnosed when admitted into A&E and was put on Bisoprolol. This made me very tired and out of breath and I still had episodes of AF. So, from yesterday I have been changed to Flecainide. This drug has been dubbed a 'dirty drug' so I'll be interested to hear from anyone as to why? Thanks :)

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  • Hello and welcome. I have been taking Flecainide successfully for AF for a year and was interested in 'dirty drug'. So, I looked it up and apparently it is an informal term for drugs which bind to different receptors in the body and can have differing effects. Whether or not Flecainide does this, I don't know, but, for me it is certainly better than frequent, debilitating episodes of AF.

  • Thank you for that and good news that the drug is working for you. How are you dealing with AF?

  • I haven't had an AF episode since starting Flecainide - fingers crossed. I started making severe lifestyle changes when I was diagnosed 18 months ago - eating whole foods, no processed food, nothing artificial - especially sweeteners. I also stopped alcohol 😥 and generally de-stressed my life. Like you, I was very scared at the beginning, but gradually, I realised that the episodes of AF weren't going to kill me but were too much and too frequent to put up with. I found that 2.5mg Bisoprolol left me feeling useless and on starting Flecainide, it was reduced to 1.25mg.

    When I had AF I used to lie down and breathe in rhythm, trying to think of something other than the bag of ferrets in my chest!

  • Opps. So is alcohol no good then? A doctor has said a glass a night of red wine is beneficial to the heart 😕

  • Some people find it is one of their AF triggers - certainly wine was for me. Others have no problems with it in moderation. I always believed that my wine habit was really for my well-being 😎.

  • I've just started taking flecainide every day about 4 weeks ago (previously PIP ) & although it's early days it seems to be keeping the AF away. I've had a couple of tweaks in dosage and timing of dosing and to be honest I couldn't care less if it's a dirty drug! I'd have taken anything to get rid of the fear that came with that 'attack' when I had to call the ambulance.

    As for coping with af. I don't think I do really! I've become a different person and I hate it. Perhaps a bit of stability will help over the coming weeks because I've had a really rough few months with over 12 debilitating af attacks. So flecainide for me has been a godsend. ☺

    Hope this helps.

  • Hope you are on the way to a more stable period now Toto. I was similar and as soon as I was stable and had the energy I looked in depth at lifestyle changes and supplements with professional help from Alternative Practitioners, who are very much part of my team to crack this problem. So far so good but its early days yet.

  • Hi Happsuz

    Welcome to the forum, and scared is normal, sounds crazy but believe me every single one of us went through scared shortly after diagnosis. Me I came home re-wrote my will and spent some months getting my affairs in order, thinking I would shuiffle off anytime soon.

    So what changes scared?, well knowledge, and the more you know the less scared you will be, so please read the AFA website from cover to cover there is loads on there, and ask as many questions as you like here, we are all sufferers.

    Most importantly, and you have to KNOW this deep inside (sounds good but took me 6 months to believe it)

    AF is seldom fatal, it just feels that way at the time when you have an attack.

    No some specifics, Bisoprolol is a beta blocker, main function to slow down your heart and it's probably the most common drug prescribed first time, the problem as you found out is that it makes many of us (not all) very tired and lethargic, and also out of breath.

    Flecanaide however is a rhythm control drug, so rather than dropping your heart rate it trys to keep your heart roughly in rhythm so it's a different approach to treating your AF. What you will discover very quickly, is that initially it's trying to find what works best for YOU, and that will be different to me and just about everyone else.

    As for it being a "dirty" drug, not really, it does have a list of side effects but they are not that nasty nor prevalent to my knowledge and it's widely used.

    (must state here I have no medical training whatsoever)

    There certainly are "dirty" drugs prescribed as rhythm control drugs the granddaddy of them being Amiodarone, but flecanaide is not usually seen as being too bad at all.

    Now you need to get to an EP (electrophysiologist) they are the specialists, and you also need to get your CHADS2VAD score done asap (Google it) to see if you need anti-coagulants. And you need to read read read about your condition.

    Apart from that you need to take some deep breaths, and say over and over. I will control my AF, it will not control me.... It works (eventually :) )

    Be well

    Ian

  • BNF has a lot of contra indications for Flecainide for many of us.

    Cautions patients with pacemakers (especially those who may be pacemaker dependent because stimulation threshold may rise appreciably); atrial fibrillation following heart surgery; elderly (accumulation may occur); ECG monitoring and resuscitation facilities must be available during intravenous use,

    Contra-indications heart failure; abnormal left ventricular function; history of myocardial infarction and either asymptomatic ventricular ectopics or asymptomatic non-sustained ventricular tachycardia; long-standing atrial fibrillation where conversion to sinus rhythm not attempted; haemodynamically significant valvular heart disease; avoid in sinus node dysfunction, atrial conduction defects, second-degree or greater AV block, bundle branch block or distal block unless pacing rescue available

  • Hi and welcome but sorry you are now 'in the club'.

    Most, if not all of us have been in your position, AF is an disrythmia ie the electrical impulses in the top part of the heart - the atria - which make our hearts beat evenly go a little out of step. I guess we all get panicky if we are told there is something wrong with our hearts. In addition there is also a direct physical connection with anxiety and AF through the vagus nerve.

    I took Flec for about 6 years, first as a pill in the pocket and then daily in varying doses. It is a toxic drug which requires taking with care but it is effective for a lot of people and you won't know if it is for you until you try it. Bisoprolol is a rate control drug and it makes everyone breathless and tired, some suffer more than others. Flec is an anti-arrythmia drug. May I suggest that you go onto the AFA site and read as much as you can about AF and how it is treated and suggestions as to how to cope with everyday life.

    Have you seen an EP - Elcectrophysiologist - who are the specialist electricians of the heart?

    Some people find they have triggers which start an AF episode - for me caffeine and alcohol - for others - exercise - rest and loads of others such as stress or intense emotion. Triggers are just that, they don't cause -AF but can trigger an episode. You will only find out if alcohol affects you when you drink it, my heart reacted within seconds.

    Generally a glass of red wine is good for the heart - my EP says it is the U effect - those in the middle of the U when alcohol consumption was researched were found to do best - that means regular, moderate amount. Binge drinking is a known trigger and not advisable. Those who do not take any alcohol are also shown to have more heart disease than those who drink a little - but that is based upon heart disease in general - not AF.

    Many people have found lifestyle changes have improved their condition dramatically - losing weight if you are over weight - taking regular exercise - 15 mins of brisk walking a day is enough to make a significant difference - various dietary changes such as reducing meat intake and eating 'clean'.

    AF is scary but not life threatening and as you learn more and realise this, your anxiety will decrease.

    Please ask anything you want to know - there is always someone around to just listen or offer advice or an opinion.

    Very best wishes Susi

  • hi I am flecanide as pip in the pocket i don't like takeing it but up to yet its work well when im in a/f so if it works for you take it got to be better than being in a/f x

  • Thank you all for your warm welcome and kind advice. I am still at the stage that I think I'm going to die from this and sorting out my affairs just in case but reading your experiences makes me realise I've got to take control (energy permitting!) and get myself together. Thank you x

  • Hi Happysuz an optimistic name which must be a positive sign .

    Dying was not in my thoughts while in A&E .I must have been near the main entrance from the ambulance bay and the curtains were open so I could see the world go by and thought my lot was not so bad as others, but it got really scary when they were two types of drugs had little effect and they drip fed me on a third.

    My thoughts about tyding affairs came when someone offered to call at my home and pick up some clean stuff and I thought the house is a wreck.

    The comment on Bisoprolol was helpful just taken some and felt quite breathless . I realized while in hospital getting the right dose needed a bit of adjustment

    At the moment my head is all over the place as well as the heart . If the medics can control the hart I will work on my thoughts . The bit that frightens me is not knowing what else to expect or what I am up against so I was desperate to know how AF might affect me and spent ages on the web. Probably why I am rambling too much and am really glad I signed into this forum - we are not alone

  • Thank you for writing to me. I am interested in your experiences of AF and how it came about to being diagnosed so please never feel you're rambling on. When I was in A&E I overheard the consultant say about me "if she crashes, one shock should be enough". From that experience I have been convinced that I'm going to die from AF. I'm just about to take day three of Flecainide and venture out in the car with my husband today (I'm 42years old) I've been in bed mostly this week from being absolutely exhausted (from Bisoprolol?) so fingers crossed today will be easier.

    I am shocked that medication for AF is not free on the NHS, surely a drug for the heart is serious enough to warrant being kept under the wing from our national health service? And at £8.20 every month it's not cheap.

    Anyway I hope to you and to everyone that reads this that you have a restful and stress free bank holiday x

  • All treatment for AF is free in the NHS - some forum members live in other countries so do pay for their drugs.

    That was very unfortunate comment you overheard and I think inappropriate as the only time you would be 'shocked' is if you went into VF - ventricular fibrillation - when the bottom chambers of the heart go haywire - that is immediately life threatening - AF is definitely not! Very disconcerting, but not to be interpreted as something that happens when in AF - although some people are offered a cardio version (electrical shock done under sedation) when in A&E as long as they are on anticoagulants.

    Mostly if you go to A&E with AF they just monitor you, not treat you as the EPs & cardiologists don't advise treatment until they have done a full assessment which can take some time.

    If you haven't already watched the Arrythmia Disco on YouTube it is a simple and amusing demonstration of the differing arrythmias. Nothing like a bit of humour to break the anxiety!

  • I have to pay for my prescription too, £16.40 per month for Dronedarone and Diltiazem. Seeing the NHS consultant may be free but the drugs aren't. In fact my local pharmacy refused to stock the Dronedarone as it was a fairly new drug and he said it was too expensive, apparently costs the pharmacy about £60 per box so I had to revert to getting it from the Hospital pharmacy again.

  • Why will the local pharmacy not order it for you?

  • Because they say it's too expensive for them to get.

  • They get reimbursed plus a prescribing fee. They need not stock them but just order as required. They are £67.50 for 60. Do they apply the same argument to NOACs and other expensive drugs?

    You could order them from an online pharmacy

  • Because Im in a rural area there is a pharmacy within my doctors' surgery. They had to order Apixaban as they dont stock it but it wasnt a problem and it came next day. I'll just have to remember to ask for repeat prescription in good time.

  • They said they wouldn't order them the second time I went for my prescription, again they said they were too expensive. I personally would never order meds online, but that's just my opinion.

  • Lloyds pharmacy have an online service. Boots do as well.

  • Sorry I thought you meant just buy them online, I've re read your comment and see you said online pharmacy.

  • I thought that a pharmacy did not have to stock but did have to supply all medicines. The only problem occurs if a GP prescribes less than 28 days supply as that is a standard box and therefore they could be left with a part box. Is it laziness.

  • You should look into buying an annual prescription pass because it costs about £85 or and then all prescriptions are free.

  • Also most GPs will prescribe 8 weeks supply of medicines for long term conditions. However when doing calculations monthly is actually only 28 days supply so you would need 13 prescriptions per year not 12.

  • Hi, thanks for your reply. My GP and Chemist next door will only supply monthly prescriptions at a time (I'll have to have a look but yes I'm sure too that it's 28 days worth) This Is due to some 'legislation' or 'guidance' or something apparently. They have said that it would be bad practice to do otherwise. Although I could apparently pay privately for my prescription which for some drugs takes about £1 off but unfortunately not on mine. Is this common practice?

  • Unfortunately not so any longer in my area.

    The drive is to reduce unused medicines and is pharmacist led as they are often asked to go into the homes and clear medicines after deaths, the figures of unused meds was absolutely staggering! The bill for my surgery alone was £2m. Our local CCG then banned the issuing of more than 4 weeks supply unless you could provide evidence that you were travelling out of the country for an extended time.

  • CDreamer, that sounds plausible to limit prescriptions to save over ordering, I hadn't looked at it that way.

    I live in rural Somerset and it would be easier to have more drugs at a time because of this but I do see your point :)

    I hope your AF is under control and that you are finding this forum as helpful as I am. Lovely people :)

  • I am a member of my surgery patient support group and our local pharmaceutical consultant asked to come to talk to us and explain why the changes were happening. The stats she gave us were horrific. Evidently many people go to the GP, get prescribed meds, take them home but never take them nor do they tell their GP to cancel their prescriptions - can you believe it?

  • Because it's Dronedarone they will only prescribe one months supply at a time fir the first six months as I have to have monthly ECG and blood tests. Hopefully in October I will get a prescription for 3 months supply which I understand will still cost £8.20 as its all the same item. There are some meds that Doctor's won't prescribe more than a months worth.

  • For sure they are more cautious about some drugs than others but the month's supply is a general policy set by the CCG for all prescriptions.

  • Of course other areas may do it differently.......... Am in E Devon.

  • Hi

    I think Bisoprolol has a lot to answer for so make sure you aren't taking too much. I felt terrible and my blood pressure was so low I felt very dizzy - and I couldnt drive - I felt seasick and dizzy and 'not there'. Discussed with GP and halved the dose and felt much better - but still tired.

    I agree with your comment about the cost of drugs - I was quite shocked when I went to my GP for a repeat prescription (as first lot provided by hospital at no charge) and was charged for 3 items ie £24! If you pay for you prescriptions , which you and I obviously do, you can buy a three or 12 month prepayment thing but you need to work out if thats economic and its too early for me to know what Im going to be taking long term. My other thought is to ask my GP to give me more than a month at a time!

  • I think at the moment it's still cheaper for me to pay as I need them rather than the prepayment option. I still have to pay from the hospital pharmacy when I collect them on my monthly outpatients appointment, even when I was discharged from hospital after a two day stay with AF I received an invoice a few days later for the meds they'd sent me home with! In the next month or so I will hopefully be getting a prescription for three months supply of Dronedarone so that will reduce the cost as its my understanding that prescription charges are per each different item rather than multiple quantities of the same item, but I could be wrong!

  • If it is a NHS hospital then you can use the annual pass. If private normally consultants will write to your GP and GP will issue NHS prescription.

  • I only have one drug so it is cheaper to pay monthly than annually. The GP will not give me more than a months prescription at a time and as I was on propranolol for twenty years before AF, it is turning out to be very expensive. I just assumed once the AF was diagnosed the drugs would have become free :(

  • All

    Now that I am home it is easy to look up the web info rather than on iPhone.

    If you are only on 1 (one) item and the GP won't prescribe except every 28 days (they call it monthly but it isn't) then it is Cheaper to get an annual pass because that works costs £104 (ie £2.00 per week) which is only £8.00 per 28 days but a single prescription is £8.20. That way you would save £2.60 per year!!! However if you have a second medicine then the saving is £109.20 a year.

    I have seen that they now do a 3 month pass at £29.10 so actually if you want to juggle the timings then you could get 4 of the 28 day prescriptions in a 3 month pass (start the first on day 1) and then only buy the next pass when you start the 5th prescription!!!!

  • I rather think that £8.20 prescription charge a month is fair. It is not until you live in another country you realise just how good it is.

    In US you pay market value, in Spain (as a pensioner) you pay 10% of the true cost. And those are so called developed countries.

    I know that £8.20 is still a stretch for many people but I for one am so very grateful for our system when I read so many other tales of people's suffering who cannot afford to go the doctor to even get a prescription.

    I know (because I had to have a private prescription for another condition) that my meds should cost me about £350/month. If I had to I'd have to pay for them but so grateful I don't and the NHS does, through our taxes of course!

  • I was very frightened of taking flecainide after some misinformation from a couple of so called consultants. I eventually saw an EP who put my mind at ease.

    I took flecainide as a pip to start with but eventually took it twice a day for a year (100mg) and this kept the AF at bay.

    It suited me down to the ground but unfortunately had to stop taking it for other reasons.

    AF is a really crappy condition. Anything that keeps it at bay must be worth a try!

  • Welcome, if that's the right thing to say, to the world of AF! I've been taking flecainide for three years and it has helped enormously in reducing dramatically the number of AF incidents and their duration. Initially I was given Bisoprolol but the side effects were awful, lethargy, nightmares and just felt ill a lot of the time and it had no noticeable effect on the AF, so I stopped taking it. For a while I just lived with the intermittent AF episodes as they always passed and I returned to sinus rhythm, usually within a few hours sometimes up to 24 hours. In the meantime I continued to be active, ran, cycled, swam and even did a triathlon. But my main "addiction" was high intensity interval training and spinning at the gym. As I learned later, this is NOT good for AF sufferers! When I eventually entered permanent AF and needed cardio version I paid to see an EP and he explained that exercise is good but suggested to keep to 70% of theoretical max heart rate. Post cardioversion he put me on flecainide and Nebivolol, another beta blocker, which was better than bisoprolol but still had side effects. After some months my EP agreed to me stopping the Nebivolol and continue with just flecainide which has been pretty effective for me.

    As you will gather from the various replies, we all have to find a way through this that works for us and that takes a while. Although AF is a bloody nuisance and significantly impacts our lives, it is not life threatening. Best of luck with your journey.

    Steve

  • I've been on Flecainide 100mg x2 day for 17 months no problems it works. It is an old well tested drug, the only problem I saw reported was if you have some other heart defects. As said already it controls principally rhythm but I found it knocked my pulse down 4 points from 60 to 56.

    I'm afraid we are in the situation where compromises have to be made but to be positive AF has driven me to make some very positive changes in my life, which would not have happened without it.

  • I was put on 2.5mg Bisoprolol when I was first diagnosed in December 2013 (undiagnosed for around 7-8 years before that as every time I tried to explain to my GP my symptoms he said I was going through the change! Stock response from a male GP to a woman my age, currently 50!) Within a couple of months I was a different person, I was terribly depressed, didn't have any energy and just didn't have any appetite for life. I stopped taking it, not a medical decision, it was a decision I made myself for my own sanity and used it as a pill in pocket tablet instead, taking only when an episode started. I was quite happy to carry on like this as compared to some fellow AFers on here my episodes were nowhere near as bad! Then a few cock ups with lack of appointments I didn't see my EP again until May this year when he prescribed me Dronedarone and Diltiazem instead of Bisoprolol. He was going to prescribe Flecanide but as I had a problem with my mouth at the time he said that Flecanide could make it worse so went with Dronedarone and Diltiazem. They've been working fine and my episodes were few and far between then in the last four weeks they've been back to 2-3 episodes a week again . I've mentioned this to my Arrythmia Nurse but also had a lot of stress and heartache in the last 4 weeks too which may have caused the episodes rather than the drugs not working anymore.

    I was scared too when first diagnosed, think we all must be to some extent, but hopefully the fear will pass as you get to know your episodes!

    Di

  • Flecainide probably works just fine for cardiac issues.

    What cardiologists may not know is that it's also prescribed for people with multiple sclerosis because it suppresses the brain's immune system.

    Think about that. If there's some kind of invader in your brain, say, maybe Lyme bacteria (borellia burgdorferi) that's hiding from the phagocytes, and suddenly the phagocytes go inactive, what do you suppose happens? Look up Lyme Neuroborelliosis. Prepare to be shocked at the effects of this disorder.

    I took flec for 6 weeks following my second ablation this past May. The side effects were not worth whatever good the drug may have been doing. Six days after I stopped the flec, my symptoms (dizziness, fatigue, and a few other central nervous system malfunctions) got worse by about a third. And they got worse over the next 6-8 weeks.

    I've been tested twice for Lyme disease and I don't have it. But I suspect there was something else lurking in my brain that emerged when the flecainide suppressed activation of the microglial cells (the ones that turn into phagocytes). When the cat's away, the mice will play, and whatever had been controlled was free to come out and do damage. Then, when the flec was out of my system the immune system came back online and cleaned up the invaders.

    But why did my symptoms worsen instead of improve? Multiple sclerosis is thought to occur when the brain's immune cells attack the ends of neurons. I suspect that in my case they saw the damaged places as foreign and thus attacked them as well.

    If there were a way to know what the brain's immune system is keeping in check, if anything, it would be possible to know who should get flecainide and who shouldn't. Until then, if you take it you're playing roulette with your central nervous system.

    I'm slowly recovering, thanks to learning about the benefits of endorphins. Laughter is, indeed, the best medicine, along with exercise. But I still have bad days and I may never be completely brain-healthy again.

  • That was so interesting, thank you for your post. I now cannot take any anti arrythmia drug. The complexity of the interactions around the immune system is truly mind boggling.

    I took Flec for about 8 years as I was very symptomatic with AF, (worked brilliantly for me for some 5 years) sometimes as PIP, then twice daily. After successful ablation symptoms of fatigue and breathlessness didn't improve. I was naturally disappointed and about to go back to the GP when I had sudden onset muscle weakness, Ptsosis and double vision which appeared whilst driving, very scary! After stroke and bleed was ruled out I was eventually diagnosed with Myasthenia gravis.

    I know Mg is neuro muscular rather than just neuro and is because the immune system attacks the acetycholine and receptors, but do you think Flec may have had a similar suppressant response for Mg?

    In retrospect I think I had mild symptoms of Mg. certainly since my 20's. My Mg is now controlled with immune suppressants.

  • I just read up on the effects of Flec on Mg - definitely contraindicated - and this explains such a lot for me. I knew I can't take it now, but hadn't realised that it could (for me probably did) exacerbate my Mg. It had been suggested to me that it was the ablation procedure itself, evidently any invasive procedure can exacerbate Mg and of course we are an anaethetist's nightmare patient because many anaesthetics also exacerbate Mg. so there are a lot of possibilities, but Flec sort of it's for me.

    I am still a little confused when you say 'the brain's immune system'? Does that behave differently to the rest of the body? I know the brain/blood barrier does influence what goes on?

    So sorry about your bad days and so glad you realise about endorphins - best antidote and medicine definitely. We do the best we can with what we have.

    Thank you again for that info.

  • Yes, the brain's immune system is different from the rest of the body's. From what I've read (I'm just a layman who likes to read stuff), there are many kinds of glial cells in the brain, but the one that acts as "the brain's vacuum cleaner" - as I've seen it described - takes the place of several different cells in the body's immune system.

    In their resting mode, the microglial cells stay in one place and send out "processes" that sense the presence of foreign substances - anything that doesn't belong - such as viruses, bacteria, leftovers from cell division, errant bits of DNA. When it senses something it changes to an amoebic form that moves toward the foreign substance. When it gets there it changes to a phagocyte that consumes the thing. Then it goes back to its resting state, sending out processes as before.

    Those phases seem to take the place of the various cells and signaling mechanisms that the body's immune system uses. It's amazing, but considering the limited space within the cranium, it also makes a lot of sense.

    I find it immensely satisfying to think that nature developed this, as well as every other biological process, before humans ever existed. Some foreign substances, such as the Lyme bacteria I mentioned earlier, can cross the blood/brain barrier. If it weren't for the microglia/phagocytes, evolution of creatures beyond those with simple nervous systems probably would not have happened.

  • A little bit of reading about MG tells me that the problem is where the signaling nerve meets the muscle it controls. Since this happens below the brain, it would seem that MG doesn't have to do with the brain's immune system.

    Flecainide is a sodium channel blocker and it blocks the fast sodium channels in the body. I don't know what that means biochemically, but if muscular effectiveness depends on sodium channels remaining open, then flec could certainly cause problems.

    Is there a biochemist in the house?

  • Myaware is the UK charity - there are differing forms of Mg, some are known to be genetic. There are least 4 known forms of antibodies which cause the dysfunction, originating from T cells as far as I can gather - wishes I had paid better attention in chemistry now - and several more which are suspected.

    Very difficult to test for as many test sero negative for the 2 antibodies which they test at the moment. There are 15 Antis which are contraindicated for Mg - including anti arrythmia drugs and beta blockers. I think the calcium / magnesium balance is important for me - calcium supplements are also contraindicated so muscle cramps are often an issue.

    Although I am currently AF free and hope to stay that way, I am concerned as to future treatments, should AF recur as my options would be very limited, unless there is a big improvement in treatment or a cure for Mg. Neither seem likely options in the foreseeable. Keeping as healthy as I can is my best option but difficult when I cannot exercise at all, like today, as even getting up, dressed and breakfasted means I need to have a rest. On good days I can be almost normal and walking on the flat is ok, or swimming. When at its worst my eyes close so I can't do anything other than lie doBwn and listen to audio books.

  • Mistake - it is magnesium which is contraindicated - causes brain fog too!

  • lol biochemist has left the building....

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