Has anyone here been started on F without any tests whatsoever?
I thought that my GP indicated to me that he could and would start me on F on his own, without any hassle.
Now that I've asked him about this, he says that it's a matter for my cardiologist.
Well, the problem with that is that my cardiologist is 180 miles away, and his P.A. is 100 miles away. Both of them are booked for weeks. I live in rural Oregon, and the roads are bad with frequent fatal collisions.
I'm wondering if I made a mistake in getting a specialist. My GP did recommend that I find a cardiologist, but I'm wondering if he would have prescribed the F without me having a cardiologist.
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Corazon17
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I am in the South West of UK and I was sent for tests ...end up travelling 90 miles in each direction for such tests ...all on the instructions of my Cardiac Consultant. Could not start Flec until these test results had been reviewed by Consultant. So far my existing medication is doing the job but having been cleared for the use of Flec it is there if my Consultant needs to switch.
It is highly unlikely you can get Flecainide prescribed without appropriate tests re structure/function of your heart and proper consideration of your circumstances including cardiac history by a cardiologist or EP.
The following is a sample of what is written about Flecainide use:
"According to AHA/ACC/HRS 2017 guidelines, flecainide is contraindicated in patients with structural heart disease. Other contraindications include hypersensitivity, documented second or third-degree AV block, sick sinus syndrome, bundle branch block, cardiogenic shock, and acquired/congenital QT prolongation with a history of torsades de pointes.
Caution is also advised in myocardial dysfunction, CHF, QT prolongation, electrolyte abnormalities, and pacemaker use.[8]
Significant drug interactions include ritonovir, cisapride, despiramine, dronedarone, quinidine, saquinavir, and tipranavir. Concurrent use with these agents is contraindicated. It interacts with many other drugs where therapy modification may be necessary, so thorough medication reconciliation is necessary with flecainide, as with all drugs."
Apologies for the reply delay ............. routine blood tests and I can't now find the comments on them in my files. The most critical feature concerns the round trip to Exeter for a Cardiac CT Scan - the resulting comments in brief were .....
"He has also had his cardiac CT scan performed at Exeter which has shown calcified coronary arteries but no significant flowlimiting stenosis. His stenoses are only mild ".
Not brilliant ... but could be a lot worse 😀
For me the best thing is that I am on Sotalol which I am tolerating reasonably well and have not needed to take Flecainide, even though - thanks to both good blood test results and a Cardiac CT Scan - I am approved for it if I need it.
Only secondary care (consultant specialities) or competent GP (meaning they would at very least have been registrar in cardiology at some point) are able to prescribe certain classes of drugs and Flecainide is Class 1 antiarrythmic meaning it is toxic.
If you really cannot get to see a consultant then you could ask your GP to write a letter to the cardiologist and order the tests which would at the very least - Full blood test including liver & kidney function, ECG and echocardiogram. Trouble is that your GP is unlikely to do that as it would then come from their budget whereas if you go to secondary care the testing goes through consultant’s budget and believe you me, they protect their budgets! You would probably also have to pay for the letter to consultant so much easier for NHS that you go see your cardiologist, although inconvenient for you.
If you have other conditions such as hypertension or CVD it could be more complicated. Everything I was prescribed had to go through EP, Neurologist and Pulmonologist.
Personally I don’t think it’s that far to travel, it’s a small inconvenience for good health care in my humble opinion if you can’t find someone more local to you.
PS: reading a previous post of yours about Pradaxa I realised that you are probably not in UK. It is helpful to put the country you live into your profile.
I am not sure of the procedure in other countries but European and US protocols are very similar so I would imagine that is the difficulty for your GP to prescribe you Flecainide directly.
Just a comment on Pradaxa (Dabigatran) I couldn’t tolerate it as it gave me and quite a few others gastric issues so changed to Apixaban as soon as it came to market, that was 10 years ago. The difficulty of expense for patients and medication in US frightens the life out of us! Apixaban, whilst still under patent, used to cost NHS approx £50/month per patient. About 4-5 years the patent expired so competition reduced the price of the generic medications down to £5/month per patient. Now I’m not sure of the position of Apixaban now in US, I know a few months ago there was talk of openining up the market but not sure if the drug companies managed to put enough pressure on the FDA to prevent the sale of generics on all of the earlier DOACS? The generic will be MUCH cheaper - which is why we use the generic names.
I do agree generally though that Bio details are very valuable when answering others queries, including Country of Residence.
And I do wish our ever active Admin team would spend some time, other than issuing warnings about behaviours, in occasionally reminding Members how valuable the Bios are to others, and that empty Bios don't help anyone.
Interesting. I was offered several but chose PRADAXA and at 70 years then my Triage team saw no 'stuff' in my carotid arteries so 110mg x twice day. It has an antidote and twice a day mean't not a high dose which one would have on once a day.
Never had a problem. I take it with fruit or juice. But I have no gall bladder and so bile drips into my stomach continuously throughout Day and Night. Take with water as well.
Here in UK Anti arrhhthmic drugs such as flecaainide can only be prescribed initially by a consultant level once they are satisfied that your heart is structurally sound.
I see you're from the United States, like myself. Can't you just schedule a Tele-visit?
The guidelines suggest Flecainide should only be used if you have a structurally sound heart. Therefore the need for approval from a cardiologist which may involve further testing.
That said, the standards may vary significantly from one doctor to another.
Some doctors, like mine, require stress testing, and that Flecainide should be taken with a nodal blocking agent (beta blocker, or calcium channel blocker ) for safety. Other doctors may not require either. In fact, one very prominent American EP, does not require the nodal blocking requirement for some of his patients.
I have had an echocardiogram. I understand that it was not bad. But that was a phone call from someone in the cardiologist's office. I have the report but haven't tried to decipher it.
Do you know whether other tests are necessary in the U.K., or whether one can get a prescription with the echo only?
Hi Corazon .. as someone has posted above: the tests you need are full blood test to check kidneys and liver function, ECG and Echocardiogram to examine the structure of the heart.
There's a chance Flecainide may not solve your proayour doctor order the necessary tests and email the results to the cardiologist for his opinion?
I found the following about Flecainide on the Mayo Clinic website:
"There is a chance that flecainide may cause new or make worse existing heart rhythm problems when it is used. Since it has been shown to cause severe problems in some patients, it is only used to treat serious heart rhythm problems. Discuss this possible effect with your doctor."
I have had recent blood tests, EKGs constantly, and an echocardiogram. I am guessing that the results of them do not strongly caution against F.
My post was largely about my GP, who *seemed* to be ready to make the decision, until he wouldn't make the decision.
I could have misunderstood.
Maybe the GP meant that he would *support* my taking F at some point, as opposed to him knowing at that point, for certain, that *no cardiologist* would prescribe F,
The comments here, including yours, have been very helpful to me in seeing this nuance. And maybe the apparent sense of non-urgency is appropriate. After all, my 12-hour episodes three times a month, with anticoagulation in place, is a pretty easy ride compared to the other suffering that my doctor has to witness.
As for the drug, yes, I'm aware that can be dangerous. I hadn't considered it much until I saw the many people here who have benefited from it. I'm rather amazed that some people take it twice a day, in large-sounding doses.
Hi 108cat. Your statement about flec maybe causing arrhythmia problems put me off the drug, not to mention diarrhea OR constipation as a side effect. I was prescribed it as a pill in pocket 4 and half years ago. Sometimes if I'm able I can go for a brisk walk and return to regular rhythm. I'm due to see the cardiologist who prescribed it at end of October, just 13 months after gp referral.
Interesting 'a brisk walk' thanks Camelia I'll keep that in mind ... ironically after all I said, I had to take Flecainide last night so I'm pretty much floored today, however it does stop my PAF if deep breathing doesn't work.
So I don't want to put you off - if you have high heart rate during PAF for an extended time, it may be the best thing to do..
good to check it all out with Cardio if you have the chance ...
Will do Some deep breathing will help me too. One of my questions to cardiologist will be about ways of dealing AF episodes as well as how is structure of my heart 5 years on. That's when it was diagnosed but I had an irregular beat a few years before. I don't particularly want an ablation as I seem to be coping with the AF at the moment. Originally it was Paroxysmal AF. Also at 80 I believe ablation is not as effective the older one is!
There's a chance Flecainide may not solve your problem but make things worse. Can you ask your doctor to order the necessary tests and email the results to your cardiologist for his opinion?
Hi Corazon, There are some interesting, informative replies here. What struck me most about your post was the fact of frequent fatal collisions on the roads. I probably won't drive to my appointment in October as last time I did my non driving husband, type 1 diabetes, too many hypos, was so laid back about me missing the appointment because of lateness my bp was 200/105 when I finally had it taken. However it wasn't because of a road with frequent fatal collisions. Good luck with your progress!
Most people can take Flecanide with no issues. I would recommend that after taking, you have some regular ECG’s to check your Long Q interval as Flecanide is known to delay it. It delayed mine and ended up in a life threatening circumstance.
Surely they have nearby ECG places so you don’t have to make the trip?
I have been on Flecanide for 5 years I'm a private patient with only a heavy burden of ectopics no AF, no one did any tests before taking it I did however have 2 ablations previous to being prescribed but I've had no tests after taking it and took it for the first time at home alone, no one has ever checked to see if I was OK with it, my aftercare seems to be non existent!
I’m afraid the structure and function are tested before you start and in a lot of cases, not mine I hasten to add, you are started on the drug in hospital
Only a cardiologist can prescribe it here in the U.K.
do the test its essential to check the structure of heart is sound. It’s been found that more chance of negative effect of Flecainide is on those with issues with heart. I did a stress echo and ultrasound before is was started. If you do have issues with heart and start Fkecanide you have higher chance of creating what’s known as Pro arrhythmias or atrial flutter. Go to Cardiologist or hospital and get tests done first
my cardiologist has given me this drug as a pill in the pocket to use if my verapamil alone doesn’t help but I had to be on a heart monitor the first time I was given it as it can cause too low heart rate (it didn’t for me)
never seen a cardiologist …everything done over the phone. Been on flecainide for over 2 yrs now…obviously had ecg and cardio echo gram. ..dosage upped from 50x2 to 100x 2. No problems
No specialist worth his/her salt would prescribe without first analysing and verifying the problem ie diagnosis, it may well be that this is not the drug suited for your condition etc.etc., so my advice, see a cardiologist!
From personal experiance - NO do not take F without tests, it can effect the way your hearts electricl signals work with potential to produced very serious arrhythmia (it did for me after 3 months of taking it). That said F is a mirical drug for most. You may want to read my experiance with F from around December 2018 before you decide.
I think you do need to have visual evidence that your heart is, as they say, "structurally sound" before using it, either from an echocardiogram or cardiac stress MRI, and then have a 12-lead ECG both before and after taking it and at later regular intervals.
In my case, I had to wait for a cardiac MRI result to show that my heart condition make it safe for me to take flecainide. This might have been because the drug slows the conduction of atrial impulses into the ventricles and as I also have LBBB (left bundle branch block) this might make that worse. Also, flecainide is known to be contraindicated if any heart ischaemia or ventricular changes exist as these increase he chance of dangerous ventricular arrhythmias occurring as the drug is "pro-arrhythmic'.
That rather long list of potential side effects is why it has to be initiated by a hospital doctor over here and in the USA.
In the event, I only took one 50mg tablet and, while it worked completely well for that day (and indeed for around another week), I stopped taking it as I felt some unusual powerful heart beats and my GP said to go back to 1.25mg bisoprolol. My cardiologist / EP however later confirmed that I was safe to take it and not to worry about those early side effects.
I have been on it for a few weeks and feel so much better. However I had to have a cardiologist prescribe the first lot and I had to wait for 15 months for that appointment
I live in the UK and as I’ve posted here before, when the lowest dose of Bisoprolol proved too much for me to take daily, we saw an EP privately, who introduced me to having a smart phone and a Kardia and after I had sent him a reading of my heart in AF, he sent a prescription for Flecainide for me to my surgery to be taken as a Pip. As episodes increased, I was prescribed it to take regularly and it has virtually ended episodes for me. I have never been overweight and have a healthy diet- and no alcohol or coffee etc.
Flecanide is a powerful but effective anti arrthymic drug. During the drug trials,there were unexpected sudden deaths in patients with certain structural problems and other issues.If taken on its own without a counteracting beta blocker,it can provoke Atrial Flutter,as it did me. Even though I was prescribed it in hospital!
It has been effective for me ,both as a pill in pocket and as maintenance dose since 2013. I have regular blood tests to check liver kidney function( 1 or 2 per year)
It is a good and tested drug but needs careful consideration of individual case by case.
Once prescribed by consultant, primary care can take over.
I understand your concern as to whether its ' over the top' regarding starting on it,due to the lengthy and stressful trip involved but would also suggest that episodes of 12 hours or so 3/4 times a month is too high a burden,especially if you have a high rate. AF begets AF so if you can intervene to reduce it,better longterm.
Oh dear you couldn't know the riskiness of Flec. Flec. is an anti-arrhymic drug.
It will not be introduced if you are in persistent or permanent AF.
It will not be issued if you have heart structural problems.
Very rightly because of the risk. Risk of making your rhythm worse.
I can't have it. Instead CCB Diltiazem acts similar to an anti-arrhythmic drug by slowing down your beats to under 100. Mine went from 156bpm Bisoprolol to 60s Day. My normal Night is 47bpm avge.
You will learn how your heart is with a ECG, an ECHO or CT Scan and possibly a 24hr Heart Monitor.
On diagnosis, I did have blood tests, transthoracic echocardiogram, and a 10 second ecg, but I never had any contact with the cardiologist. My prescription for daily flecainide and bisoprolol was offered by an Arrhythmia Nurse (presumably with OK from the cardiologist), but I insisted I wanted to start both as PIPs (pill in pocket to use as needed). The Arrhythmia Nurse agreed to this. And I'm still using these drugs as PIPs. However, my AF burden is lower than yours (see my Bio for details).
But even so I do worry about possible side effects of flecainide, and that I had to chase my GP to authorise a second echo 2 years down the line. The only follow on ecg I received was after a worrying unexpected short period of tachycardia. I feel regular monitoring after flecainide use (both regular and PIP) could be much better.
I would certainly be asking to try flecainide if I had your AF burden, and it seems to me you've had the same tests as I did before my prescription, which was offered in the arm-length fashion I described, and which seems similar to your situation caused by living in a remote location.
I would speak to your cardiologist first. I have been taking Flecainide now for twelve years with no complications. I also came off it for awhile, as my cardiolgist here in Germany thought I would be better off using it as a pill in the pocket. However that did not work. After being off of it for almost four months, I started having short episodes of Afib. The last one, the PIP did not work. It eventually subsided on it's own. So my GP, not my cardiologist, suggested I go back to the low dose again. So far it has been working. I had been taking 100mg since 2015.
I was originally given Flec while in the Hospital. I was due for an electrical Cardioversion, and the attending Cardiologist suggested I try the pill first. I had to sign a waiver, just in case! I went back into normal sinus rhythm, within twenty minutes of the first dose of 50mg. They still monitored me for another day, to watch for any side effects.
I have had no problems with Flecainide, but others have. So I would consult a cardiologist first, before starting it. Normally you are monitored at first, for any side effects. It is a powerful drug, but for many like me, it is a godsend.
Hi, I was prescribed Flecainide on an Afib diagnosis post MI 5 years ago; with the arrhythmia being the culprit. Previous tests as part of my hospital stay included ECG and Echo; the latter showed my heart was structurally normal. No additional tests.
Monitored via annual heart review with GP - bloods, urine.
I had a nuclear atress test and echocardiogram prior to starting it. Your heart must be structurally sound. After 3-4 years, I have a lexiscan to be sure my heart is still okay structurally. And I’m very happy on it so it was worth it for me. Easy for me to get the testing done though. Maybe if you make a little vacation out of it? So sorry. ❤️I don’t know a GP would take a chance and just order it. I wish you the best.
My cardiologist suggested I might try Flecainide. Two days ago, I saw my EP, and he said no. He feels the risks are too high, and I am not feeling that bad with my every-10-days Afib episodes.
I have used flecanide - i wouldn't use it unless i was prescribed it by an EP after they ran the necessary tests on me. But do take an anti-coagulant in the meantime.
I went through a slew of tests including echocardiogram, cardiac stress test and one week on a heart monitor to examine my arrhythmia burden. Some blood tests also. Flecainide is a pretty heavy duty drug and not for everyone though I’ve had no problems and it has almost completely halted my afib episodes (only one episode since April 2023 …..at time of episode I had bad upper respiratory illness). I think the main concern is development of prorhythmia which can cause sudden major increase in heart rate that can cause sudden death. It’s rare but extremely dangerous. (Also I now see below Bean Counters thorough report of potential adverse effects) . I am 72, have PAF, but generally healthy with no structural heart defects, or cardiac disorder and no other comorbidiities so I am a pretty good candidate for the drug and very happy as it has significantly improved my life.
It's quite likely that you could get a great benefit from this drug, so don't let all the above caveats put you off. It is effective and safe, and most people don't have major side effects. Yes, you need to get it from a cardiologist, not your family doctor. Yes, they will examine you first to make sure you are suitable. No, you generally don't have to stay in hospital to be monitored when you first take it.
I was getting afib about as frequently as you are, started on flecainide, and had zero afib for some years. It's a great option for most people. Don't talk yourself out of it.
I will be honest. I don’t understand you deciding on your own whether you should take it or not that really is up to your doctors if you have an EP or Cardiologist do they do televisits?
honestly your travel is not much worse than mine. If I have to go to Houston it’s easily three hours my EP is over an hour away the joys of living in rural areas.
I think your doctor was smart to back away from that. It’s not his call to make if you are taking some thing and you just needed refills, but even then I find my meds in the beginning were constantly being changed. They still are I don’t know why you want to take a chance with your heart. The questions you ask about testing, etc. you need to ask your doctor your heart doctor whether it is him on the phone with you or he tells one of his people what to tell you that’s the way you need to go. This is no joke please make a phone call to your EP or Cardiologist and explain the situation to his PA or whoever works for him. The nurse that works for my EP I would almost trust her to do surgery for me she is that good? my EP among other things is also a teacher. I think it’s at Baylor. I’m not sure. Have you ever seen the commercial about no time to wait? They have come along way even since my first a fib atypical flutter attack. Make sure you do it right we are all so different. It doesn’t matter what any of us say whether we agree with you or not, we are not you. We do not have your body and heart.
I'm not at all deciding on my own whether or not to take this.
My post is about my impression that my GP had indicated (on more than one occasion) that he was prepared to do the prescribing upon certain events that have since occurred.
And now he will not do so.
He did, however, through his office staff, indicate that he did not think the drug would not be prescribed by my cardiologist.
Or, to put it another way, he indicated that my cardiologist might prescribe it.
And then I asked here what the cardiologist would look at. And I learned that there will be a substantial wait for a decision and a possible plan -- early October with his P.A.
For 50 years I drove the freeways of L.A. and never worried about getting badly hurt in a crash. After 12 years of retirement in rural Oregon and knowing about at least 50 fatal accidents on the local two-lane highways, my love of "scenic" driving has ended. I was acquainted with four victims. If I were using safe freeways -- where there is no head-on traffic and plenty of room for assholes to pass -- I would have zero problem with seven or more hours of driving. On a trip earlier this year in L.A., it took me two hours to drive 20 miles on a jam-packed four- and five-lane freeway, at 3:00 in the afternoon. I was amazed at the patience and courtesy of 99.5 percent of the drivers. I wondered how many people have pilot-relief tubes (or their equivalent)!
I am blessed with the fact that both my Cardiologist and EP always find the time for me when needed. I had a situation with the battery of my PM. He dropped everything and told me to get in the car and head his way.
I never had issues with driving. It’s not my favorite It’s the crazies out there. Since moving to Texas two years ago, my panic attacks have gotten terrible.everything here are major highway and then they have a loop you get off of to go down into the city that is there. Most of the time you were sharing the road with large trucks and overtired drivers in them. Very scary. I was hit by one of them and may be getting surgery very soon because I now have cardiac clearance and hopefully will keep it long enough to get this finally taken care of walking and balance are pretty much nonexistent right now and it’s not anything to do with my heart. I was an EMT and law enforcement so trust me I know all about accidents , especially fatalities. I have medication for my panic and anxiety but the problem is I won’t drive taking it so what good is it?
I was surprised to see you were US. I think we are very lucky with our medical care. I cannot believe the wait time you have for your doctors. Have you considered the possibility of changing? I had great ones in Florida I would not have given up for anything except I had to when I moved it it’s hard to make the change. I had a big fancy one and Houston recommended. I am taking the deep breath, not saying much about him, but he is not the rockstar. Everyone thought he was and I made sure I let my former doctor know that and I said if I were you, I would not recommend him , and I told him why he agreed and said find someone else ASAP because the other guy I was now going into some serious heart failure along with everything else I could not walk and even standing up crushed my chest if I didn’t just sit like a vegetable I was in pain you find doctors and unusual ways for me. It was my mail carrier. I had made friends with her when I moved here. She told me about the Cardiologist. Anyway, I got right in with the Cardiologist and he scheduled me immediately to meet with the EP three days later , things moved fast. First thing was a cardioversion. I had never had. This was in October by December. I had my second cardioversion a complete failure very serious Valentine’s Day. I had a new beginning to life with a pacemaker. My doctor designed for me because there was none for me, he thinks outside the box and he’s brilliant , I could write a book about how incredible he is, I think he was doing heart surgery while still in the womb and he is humble and sweet. I had a list of questions he gave me answers before I got to ask them he talks to you like a human you can’t tell I like him can you L O L
here I am a year and a half after getting my pacemaker. It is state of the art one of a kind. I am referred to as unique. I thought they were being funny, but it was true. I have a tech assigned to me. I have what is called HIS pace bundling it was brand new when he used it. I don’t know what they are dealing with it now but for me it was my lifesaver.I had a fib and a typical flutter , I had the AV node ablated. honestly, I don’t quite understand why that isn’t done every time because they go hand-in-hand with your pacemaker so your pacemaker is efficient. My heart failure ejection rate has reversed because the pacemaker was just in time to start giving my heart a rest to heal it doesn’t always happen, but thankfully it did for me. I was in the 40s now in the 70s, which is normal even without heart issues at my age.
I just want to say to you we have a Cardiologist and EP for a reason. I love my GP and there are other areas of health. He really excels at but when it comes to the heart, I go to my heart doctors. FYI for me to even go to the ER, which is close to my house would be pretty much a waste of time unless I’m in very bad shape and all they can do is stabilize me. They would keep me stabilized and comfortable until my EP got there a good way to remember is your EP is your electrician Cardiologist is your plumber anything to do with implants you need your EP. My Dr is actually located a little over an hour away without traffic and that hospital is set up for Heart surgery. we have some incredible and gorgeous hospitals in Houston. They are some of the best in the world however, at the end of the day it comes down to your doctor. I wish you the best October is almost here. You will find your EP or Cardiologist are the ones that will be able to explain to you, whether or not you need that medication what it does every day they are coming out with new and better who knows by the time you see him there might be something even better. I don’t know if you have any electronics, which is why I keep mentioning EP or Cardiologist. I am also monitored 24 seven by the clinic if there’s anything going on my doctor and tech will know before I do probably they just ran a scan the other day and let me know all was well. Yes, they can do it without me being aware and without going anywhere. Anyone needing a pacemaker these days should not be worried. It’s the best thing I could’ve ever been offered and I was as anti-pacemaker as could be. Best of luck as I mention see if they will do a tele visit. if you don’t need any testing, he may be able to just give you the prescription.
Be careful. Not everyone is suited to flecainide. If you have any dangerous arrhythmias it could make them worse. I have a sodium channelopathy with a lbbb and various arrythmias including VT and have been advised that any anti-arrhythmias could lead to dire consequences.
My EP dr ordered a stress test to make sure my heart didn’t have any problems before he put me on Flecainide. I was started on 100 mg of Flec twice a day. I started having blurred vision, dizziness, so they put me on 50 mg twice a day. My Afib and arrhythmias made a turn for the worse so I was taken off the Flecc. Unfortunately, I’m just one of the people that can’t take it.
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