Hello everyone. I am worried about my Husband and the choices being offered to him for the treatment of his AF and I would welcome members thoughts and opinions on the matter.
My husband is 75. His heart history as follows.
1. Palpitations, attributed to short salvoes of supraventricular tachycardia and ectopic beats, long-term treatment with Flecainide 100mg x 2 (since 1989)
2. Normal heart structure, valves, measurements etc.
3. Paroxysmal atrial fibrillation (incidental finding, April 2023)
4. 7-day cardiac monitor (April 2023): sinus rhythm (41-121 bpm): frequent supraventricular ectopic beats occurring in isolation (7.6%), as couplets (1.2%) and as triplets (5.3%), short runs of supraventricular tachycardia (maximum 16 beats), single episode of atrial fibrillation (duration 2hours 15 minutes, rate 68-121 bpm). This AF was asymptomatic.
Cardiologist recommended anticoagulant, and beta-blocker. Hubby tried beta blockers (low dose) but had to stop as heart rate dropped dangerously low ( his normal BP is excellent for his age eg 105/60. (Hubby is still considering the anticoagulant option.)
Cholesterol is also excellent for someone of any age—it ticks all the free boxes
As he cannot take beta-blockers, the Consultant Cardiologist consulted an EP and they have now said that he should stop flecainide and have an ablation or have a pacemaker fitted. The big mystery for us is WHY the doctors are alarmed that flecainide is being used : and they either want to stop it ( after 35 years, that seems risky to us) or circumvent it by use of ablation or pacemaker ?
Hubby wants to carry on taking flecainide. He has been happily taking it for a long time with no adverse effects and he would prefer to just carry on taking it, especially as even in AF his heart rate did not go above 121bpm.
My questions are...
Any thoughts/experience of just taking flecainide?
In an “emergency” could a beta-blocker be taken as a “one-off” if an AF episode showed a high heart rate (although it is likely to be asymptomatic)?
Sorry for the long post and thank you for reading it. Any thoughts/suggestions/advice would be very much appreciated.
Peg
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Peg99
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Peg: As he cannot take beta-blockers, the Consultant Cardiologist consulted an EP and they have now said that he should stop flecainide and have an ablation or have a pacemaker fitted.
The beta blockers are to protect the AV node as Flecainide can sometimes be pro-arrythmic. However, the drug, Diltiazem, can do exactly the same thing, often without the same side effects and heart rate lowering properties. I took Diltiazem when I was on daily Flecainide, because I could not tolerate beta blockers.
The other question is how well does your husband do off the Flecainide competely, as his reports do not sound so bad at face value? If he's really asymptomatic, maybe he's being over treated?
In any event, do not let him get talked into an ablation -- and especially a pace maker -- without consulting with at least two other ep's.
As to taking a beta blocker"one off", it's called Pill in Pocket (PIP) and very common. Alternatively, he could take Dilitazem "one off" as well. And he could also take Flecainide PIP, which would be taken along with either a beta blocker or Diltiazem.
With PIP Flecainide, it would be only taken let's say at the onset of an afib episode and then stopped when he returns to normal rhythm. But again, if his episodes are asymptomatic and self terminate, the question is does he really need to take anything at all?
You might well have a point about my Hubby being overtreated, trouble is it's been going on since 1989! Do you know if the pro-arrythmic properties of flecainide were known about back in 1989 please?
Hubby says he will ask about Diltiazem when he sees his Cardiologist in the summer and also fully explore the various PIP options too.
Thank you so much for all this information, I think I can see the clouds of confusion starting to clear.
Do you know if the pro-arrythmic properties of flecainide were known about back in 1989 please?
Just a guess, but I'm pretty sure it was. And that may be why your ep prescribed a beta blocker with it. The beta blocker acts as a nodal blocking agent for safety. But again, the calcium channel blocker, Dilitiazem, offers the same protection, often without the side effects discussed.
Baba: Diltiazam can have the same side effects as beta blockers-lowering BP and heart rate too much. Everyone’s reaction to drugs are individual.
Diltiazem tends to have less effect on resting heart rate and more of an effect on elevated heart rate, while beta blockers tend to depress both. As to BP, I wish that Diltiazem helped, but for calcium blockers, it's a poor bp medication as say compared to Amolodipine. But I do agree that everyone's reaction is individual, but the OP, like many of us, doesn't to well on beta blockers, do Diltiazem seems the next logical step to take.
I couldn't tolerate either Bisoprolol or Diltiazam prescribed both to reduce heart rate in AFib but both affected BP as well, was having syncope on Diltiazam.
Amlodipine doesn't suit me either, lowers BP too much..
Thanks baba. Hubby is very keen to stay on medication route, certainly for as long as possible so he will look into Diltiazam and keep your comments in mind.
Just a point re Diltiazem. Your husband's BP is good - at the lowish end and Diltiazem dilates the veins. So he'd need to consider carefully about using it, and which dose or he could end up with unpleasant BP hypos. Also, in the UK we cannot use Diltiazem as a PiP because we only have slow release type. Which would mean taking a dose every day.
Thanks for the info and the warning about BP hypos Singwell. Hubby is very dubious about taking anything that lowers BP. When he tried Bisoprolol at a very low dose his BP and resting heart rate went very low and it took ages for his body to get back to his normal. But he will discuss this with the Cardiologist in the Summer.
Chiming in to add my experience. I didn’t tolerate diltiazem well at all…it increased the intensity of my Afib episode and unfortunately prolonged the duration since it was an extended release pill. Amiodarone was a similar experience but not as bad. Flecainide has been helpful and I’ve opted to take it daily (50 mg 2x) increasing it if needed for an episode.
"if his episodes are asymptomatic and self terminate, the question is does he really need to take anything at all?"
Yes, daily Flecainide might be an overkill if AF is asymptomatic but the Flecainide was prescribed for the supraventricular tachycardia and ectopic beats.
Even with his twice daily Flecainide, the Holter monitor reported "frequent supraventricular ectopic beats occurring in isolation (7.6%), as couplets (1.2%) and as triplets (5.3%), short runs of supraventricular tachycardia (maximum 16 beats)".
It begs the question, what will happen to his burden of supraventricular tachycardia and ectopic beats if he stops his daily Flecainide in favour of using it as a PIP for AF?
BC It begs the question, what will happen to his burden of supraventricular tachycardia and ectopic beats if he stops his daily Flecainide in favour of using it as a PIP for AF?
Yes and it really begs more other questions than answers with the limited information given and that he's been on daily Flecainide for such a long period of time. Ectopics in of themselves, don't necessarily have to be treated and short runs of SVT's can be relatively benign, at least according to one f my ep's when I had them. That's why I suggested some alternatives under medical guidance, including a second or third opinion.
"it really begs more other questions than answers"
Yes, hard to comment without knowing more including why doctors "alarmed" at Flecainide being used. It doesn't appear to be contraindicated but how good a job is it doing given Holter monitor results?
PS Yes, I was initially diagnosed with ectopics after 24 hour Holter monitor didn't detect the real problem I was experiencing, Paroxysmal AF. Cardiologist assured me mine were harmless and no treatment required. From what I have read, significant burden of ectopics can be a problem requiring medication though.
Thank you for the comments passing between you and mjames1 which I have noted with interest. But would it not be best to direct the comment and questions you raise to me as the OP and as the matters being discussed are about my Hubby and therefore I might be able to answer and join in your debate as it appears relevant and interesting please?
For example we don't know whether Flecainide is helping with the incidence of SVTs/Ectopics but it is making them more asymptomatic; and after 35years Hubby is not inclined to stop a medication that seems to be giving him 'quality of life' help. Is that reasonable please?
I absolutely understand your concern and agree in-principle to your suggestion/request.
However, from a practical perspective if I direct my comment to you then the commenter doesn't get notified and it goes to the end of the list of comments - so they will potentially not see it. If they do and respond as you want i.e. reply to you then it would also be shown at the end of comments. The back and forth would therefore become quite disjointed for everyone concerned and difficult for everyone to follow or might end abruptly because my comment is not seen by the original commenter or vice versa.
As stated, I understand your concern but would add my initial comment was about mjames1's suggestion about PIP Flecainide rather than directly on your post. My second comment was really only agreeing with his response to my initial comment i.e. neither directly related to your post
As for my questions in my comments that could have been directed to you - 2 were rhetorical (no one knows the answer unless Flecainide is stopped in the absence of another treatment), the other you have already stated you don't know why the doctors are "alarmed" at the use of Flecainide, otherwise I would have asked.
I have a separate response with questions and comments to you, which I did prior to reading your response above.
I trust you understand why we respond to commenters about their comments rather than the poster. I certainly agree that questions that can and should be addressed to the poster, are and where applicable, I endeavour to do so.
I hope I haven't caused you any concerns, it certainly wasn't my intention. I'm only trying to help out by pointing out issues I see with comments that have been made.
Hello bean_counter. Thank you for your comprehensive answer to the point I raised. I am most grateful.
I did not really have any concerns per se --- as someone with no Forum etiquette expertise, it seemed a trifle impolite to " talk about someone (especially OP) as if they were not in the room".
However, you have educated me as to why your methodology is sometimes required. I understand and am perfectly happy with your reasoning. Thank you for taking the time to explain it to me.
May I take this opportunity to thank you for the many helpful posts that I see originating from you on the Forum.
Finally, I can clear up 2 of the points you have raised. First, a second opinion HAS indeed been sought (from an EP) who merely said ablation (first choice) or pacemaker (not very keen in my case).
Secondly, trying to sum up all the comments that my original post has elicited, there is one point in particular that keeps cropping up ie. the Consultant's sudden panic about Flecainide after 35 years of taking it every day which you yourself questioned. In the hope that it might help further opinion on the Forum, the reason seems to be (and I quote the Consultant's letter) "He is taking Flecainide without an AV-node blocking drug as Flecainide can precipitate dangerous rhythm disturbances in patients with paroxysmal AF when taken without an AV-node blocking drug". Poorly worded I think but it is how he phrased it.
He has asked Hubby to consider one of the following options for his next visit in June:
1. ablation (reducing further episodes of AF and also the burden of SVT/Ectopic beats, and may possibly let him stop taking Flecainide).
2. Pacemaker (neither Consultant or EP is keen on this approach in Hubby's case.
3. We could try Amiodarone in place of Flecainide (what he calls a "dirty drug" with long list of side effects.
4. Gradually withdraw Flecainide and see how he gets on (Hubby is, quite sensibly I think, extremely nervous about reducing or stopping a drug he has taken every day for 35 years).
Hubby has added a fifth option which will probably annoy the Consultant when put to him in June: leave everything as it is.
Once again, my thanks to you and all responders who I would be delighted to hear from again after what I have said above, especially my Husband's fifth option which may be puting him at more risk.
'take Flecainide PIP, which would be taken along with either a beta blocker or Diltiazem.'......Cardiologist after doing Angio dye scan checks , has just prescribed me Flecainide as a PIP (unsure of dose as waiting for prescription). I am not tolerant of BB's but could probably handle one of Nebivolol or CCB, I asked him twice if I should take a BB or CCB with the Flecainide but he said 'no', just the Flec. I thought everyone needed to take one with the Flec PIP?
The caution/warning comes from an older study that ep's might interpret differently. Below is an exerpt from an NIH article. For obvious reasons, I doubt they will ever do an RCT on this. In the US, most ep's -- but not all -- prescribe nodal blocking agents with Flecainide. It seems to be a mixed bag, elsewhere. Personally, I have held my nodal blocking agent when I reduced my daily Flec dosage to 2.5 mg twice a day. Not sure this was a wise move, but I did read that lower doses were safer in that regard. But anything over that, I take Diltiazem with it. And of course a lot may depend on how structurally sound your hear is as well. Again, no RCT's that I know of. If you've been on Flec for some time without a nodal blocker under the guidance of a trusted doctor who knows your medical history and no issues, not sure I would be that worried, but this is just a lay opinion.
It is well known that class IC antiarrhythmic drugs may potentially be associated with proarrhythmia, either as atrial flutter with 1:1 antrioventricular conduction or ventricular tachyarrhythmia. Flecainide can convert atrial fibrillation into atrial flutter, potentially resulting in a rapid tachycardia with more than 200 bpm in case of 1:1 atrioventricular conduction[28]. The reported rate of this proarrhythmic effect is 3.5% to 5.0% and has been associated with high adrenergic conditions[29]. Drugs with atrioventricular nodal blockade properties, such as β-blockers, verapamil and diltiazem, should be administered concomitantly in order to lower the risk.
Below are quotes from an article from the Cleveland Clinic (renown US hospital) Dec '21. (I am not necessarily a pro ablation person but in each individual case may prove to be best)
Difficult decision. Likely the doctor's concern, weakening of the heart over time as he ages.
Also, is he being monitored for future episodes of afib ? If not, may want to invest in a Kardia Apple Watch or Wellue.
Best to discuss with the medical professionals including a second opinion.
People who require therapy in the form of a catheter ablation to eliminate the areas responsible for the abnormal electricity can have cure rates close to 95% depending on the specific SVT.
A catheter ablation helps most people with SVT (supraventricular tachycardia) and has a low risk of major complications.
Thanks for the info mav7. There is so much info out there it can get confusing. Hubby is collecting info like this to have an in-depth discussion with Cardiologist in the Summer after he has had a 14 day cardiac monitor to see what that shows.
As to a home monitoring device it is something he is thinking about and the various posts on this Forum have a lot of helpful information.
"is he being monitored for future episodes of afib ? If not, may want to invest in a Kardia Apple Watch or Wellue."
I know you can use without symptoms but I am only prompted to use mine when I have symptoms. In the absence of symptoms it would be a "stab in the dark" trying to find paroxysmal AF. How often would you use? Hourly, every few hours, several times a day? What about while sleeping?
My Kardia is great but I don't think it's a practical solution for detecting asymptomatic AF.
If he is happy and reassured by his medication and at the age he is why change. But it might be provoking arrythmias which is why the dr wishes to find an alternative solution. However an anticoagulant might be a good idea? All the best
Thanks for your thought Lilypocket. Do nothing seems to be the hardest thing for a medic to advise but it is something Hubby is thinking about. Anticoagulant is an ongoing thought. Thank you.
There is a very exclusive club here that take Flecainide only and your husband is more than welcome to join us 😁.
From Lone PAF diagnosis at 60yo with similar BP, no comorbidities and an HR around 60 my cardiologist put me 200mgs/day Flecainide without any BB as he said the latter would make me 'feel unwell'. Over the last 11yrs coupled with many lifestyle changes I have had no problems.
Due to comments here, I have pressed him several times on is it safe and the last time I asked he said as you get older it gets safer! So happy to continue as is.
The one concern I have for your husband is his history of different beats (not my experience) and that PAF was spotted last year. His heart may have been compromised by Covid or more likely the C-jab. In his shoes, I think I would request a Troponin blood test (for heart damage) and while you are checking this out a test for micro clots also.
If the tests are all clear, I would postpone an ablation and keep the same medication as the heart loves moderation & stability.
Hubby likes the idea of a Flecainide only club, he might well end up joining😁 Very intersted to hear you have been Flecainide only for 11years with no problems.
We hadn't thought of asking for the tests you mention but it does sound reasonable and Hubby will be asking for those in the Summer when he sees his Cardiologist.
65 .. I've been taking flecanide 100 x 2 daily and anticoagulant and statins...and magnesium.My resting heart is about 53 and think bp is now at an acceptable level to Dr altho it's always been the readings I have prior to bp tablets.
Express your concerns.. at the end of the day its his body.. his heart and if he's happy that will surely make his heart happy..
Not sure on all the other bits you mention.. I'm no heart dr lol
Thanks Peacockmumma. You're right, of course about expressing concerns and deciding what's best for his body but it is difficult to go against medical advice. I'm asking the questions here to give help us decide what is right for Hubby and then to have an in-depth discussion with the Cardiologist to make final decisions. All the info we are getting here is so helpful and I thank you all.
hi Peg. Do I understand correctly that your husband has been taking Flecainide 200 mg/day for almost 25 years without a betablocker?
In his case, -asymptomatic and under control with Flecainide- I would never consider an ablation, a highly invasive procedure with a less-but-stellar succes rate, a reasonably high risk of complications and involving a huge dose of radiation.
If there are no comorbidities limiting his salt intake, he could try eating more salt to correct his basic low blood pressure. That’s what my first cardiologist advised at the time. Good luck !
Hi Abbyroza, yes Hubby has been takingFlecainide 200mg/day since 1989 without a beta-blocker. What you say is pretty much what Hubby's first thought was. Your comments about salt intake are worth thinking about. Thanks for your suggestions.
I am 80 and was healthy and active until I developed paroxysmal AF after a bout of shingles when the pain came before the rash and I couldn’t get an appointment at my surgery! It is now controlled with Flecainide 2x100mg and I haven’t had an episode for well over a year when I had just one short episode when I must have been infected with covid - no symptoms but a positive test . The lowest dose of bisoprolol brought my heart rate down dangerously low and if I am not having any AF episodes I am not at risk of stroke and have not had anticoagulants for ages and still here!! They had nasty side effects for me.
Thanks Vonnegut. It is the possible lack of AF episodes that is making Hubby reluctant to do anything drastic straight away. Pleased to hear you've been free of episodes for a year. Long may it continue.
Thanks, Peg, Well over a year now! I have a lovely old friend called Peggy and you have reminded me to give her a call which I’d been meaning to do, so thank you.
For me the drug route was a disaster and Flecainide (I took first with Beta Blockers, then for a short time without) did me no favours and I developed several much more serious conditions as a direct result of taking Flecainide. I was warned about the dangers so fully informed but the protocol at that time was to try antiarrythmic drugs prior to more invasive procedures (I had mix of AF/AFl).
Pacemaker was the best thing I ever did and if I could rewind and go back to the start, I would have pushed for pacemaker a lot sooner but not born with hindsight. I have a RST - re-synchronisation therapy pacemaker which is a 3 lead pacemaker.
What I don’t understand is if your husband was asymptomatic - why treat at all - apart from prophylactic anticoagulation to reduce stroke risk but even then with no co-morbidities and no hypertension and one episode of AF only age would indicate a risk factor? ? I think asking if he had been overtreated in 1989 is a good question to ask.
However, he was and you are were you are now so - in your position, my concern would be what will happen when Flecainide is stopped, then how he would be monitored and then treated?
Is the cardiologist a specialist in arrhythmias? I think seeking a second opinion, someone who would look with fresh eyes a very good idea.
Yes, you can have beta blocker as PIP (pill in the pocket) to control HR but varying opinions as to its effectiveness but if one cannot tolerate them, you cannot tolerate them. Doesn’t really matter if it’s one or every day.
I have not had one run of high, sustained heart rate (ie 130+) since pacemaker implant in 2018 whereas I would frequently be up to 180 for hours/days when tachycardia or Af episodes hit. I take nothing other than anticoagulant now as my risk profile for stroke is now high.
Thank you for all this info CDreamer and for sharing your experiences.
You raise a number of pertinent points about future monitoring and treatment which the Cardiologist will need to explain when Hubby next sees him in the Summer. Anticoagulants will also come up as he will be 75 by then.
A second opinion is looking more and more likely in the light of the replies I have had to this thread but at least we will be better informed/more prepared for future discussions thanks to everyone on here.
"What I don’t understand is if your husband was asymptomatic - why treat at all - apart from prophylactic anticoagulation"
AF might not need treating (except AC) but according to his history Flecainide was prescribed for SVE and SVT, which is clearly still a problem given Holter monitor results.
PS - I just read a study on Medscape about mega study on antiarrythmic drugs causing bradycardia in some people - just raising awareness.
A new study has highlighted the risks for syncope and bradycardia as potential side effects with anti-arrhythmic drugs when used for the treatment of atrial fibrillation (AF).
Researchers analyzed data on 674,303 patients with new-onset AF from Korean National Health Insurance Services and found more than a threefold increased risk for syncope and pacemaker implantation in patients who were prescribed anti-arrhythmic drugs compared with those who were not prescribed such drugs, an observation which remained in a propensity-matched subgroup. The risk appeared to be greater in older patients and women.
"This association of bradycardia with anti-arrhythmic drugs is not in itself a new observation," Dixit explained. "Most of the studies with anti-arrhythmic drugs in AF have shown an association with bradyarrhythmia events, but this adverse effect has not so far attracted much attention as the overall incidence is believed to be low and the studies were designed to look primarily at arrhythmia outcomes and mortality."
3. Paroxysmal atrial fibrillation (incidental finding, April 2023)
Just to clarify, he has been on Flecainide since 1989 because of SVT and ectopic beats but his first episode of Afib did not occur until April 2023. Is that correct?
7-day cardiac monitor (April 2023): sinus rhythm (41-121 bpm): frequent supraventricular ectopic beats occurring in isolation (7.6%), as couplets (1.2%) and as triplets (5.3%), short runs of supraventricular tachycardia (maximum 16 beats), single episode of atrial fibrillation (duration 2hours 15 minutes, rate 68-121 bpm). This AF was asymptomatic.
If this 7-day cardiac monitor is an indication of his current heart rhythm status, and the Flecainide has been been prescribed to correct these heart rhythm abnormalities, I would question if the Flecainide is really doing its job. Was he having even more ectopic beats than this cardiac monitor shows prior to being prescribed Flecainide?
I'm 69 years old and my situation is kind of the opposite of your husband. I started taking Flecainide in 1999 at age 44, because of frequent Afib (AF) episodes. I also had episodes of Atrial Tachycardia (AT) during the same timeframe. After about 10 years, and I was taking the highest dose of Flecainide recommended for AF of 150 mg twice daily (300 mg total daily), the Flecainide became less effective in controlling the AF. So in 2010, I had a catheter ablation for the Atrial Tachycardia (AT) which stopped those episodes. And then, a year later in 2011, I had a catheter ablation for the Afib (AF). I have not been in AF since. However, in 2020, I started having continuous ectopic runs of Premature Atrial Contractions (PAC's) and Premature Ventricular Contractions (PVC's). My cardiologist decided to put me on Flecainide, 100 mg twice daily, to control the ectopics, which are mostly PAC's. The Flecainide has done a good job in controlling those ectopics. I'm now reducing the Flecainide to 50 mg twice daily and see how that works. My hope is to stop the Flecainide completely but I doubt that will be possible. We'll see.
I need to mention since starting Flecainide in 1999, as best as I remember, I was also on either a beta blocker or calcium channel blocker. You might want to check out another post on this website where the opinions of members on the use of beta blockers with Flecainide are also discussed. healthunlocked.com/afassoci...
My experience is what works for one person may not work for another. Everyone is different, as you probably have already discovered after reading these posts.
Hubby feels that his SVTs and ectopic beats are being controlled by his Flecainide. If the frequency is always as indicated on last year's 7-day heart monitor, it would seem that most of them have become asymptomatic over the years. Whether or not the incidence of ectopic beats/SVTs was the same or not back in 1989 before the Flecainide we don't know as his Consultant didn't share such information with him back then. He is having another cardiac monitor in the Summer to check if the results are the same and then we'll have better idea of what is going on.
Sorry to hear about the progression of your conditions and I hope all goes well for you now. Thanks too for the link to an earlier thread about Flecainide and beta-blockers. It make very interesting reading and as you say it is different for everyone.
Re the PIP diltiazem idea - I am not allowed Propafenone/Flecainide for some reason (proarrhythmia I think) so just take Diltiazem. I used to take 120mg of diltiazem and after I had to go to A&E because it wasn’t enough to keep my rate down in AF I asked my cardiologist about using an extra dose as PIP but he said I couldn’t do that because if I reverted naturally while the extra drug was still in my system my HR could be much too low. This may only apply to me because I have had conversion pauses long enough for me to nearly blackout. The solution was to raise my regular dose to 180mg but if that doesn’t work out I have to have a pacemaker to allow for as high a dose of medication as necessary.
I too had to stop flecainide after 10 years. My heart rate changed to being low, made me feel faint and EP halved beta blocker. I now use flecainide as pill in pocket, that I take when I have AF episode. Seems to work, takes an hour or so. Ep talking about pacemaker. Pat
Sorry to hear that Flecainide stopped working for you. If it had stopped working for my Hubby then I think he'd find it easier to accept the Cardiologist/EP wanting him to stop it. Pill in pocket does seem to be a good compromise but as Hubby doesn't know he's having an AF episode it makes that option difficult.
-I have been taking Flecainide twice daily since 2011 after 2 episodes of paroxysmal AF. Since then have only had one prolonged episode prob due to a virus and dehydration combination. I did not tolerate betablockers, dropped my heart rate too much so just take flecainide and anticoagulant ( I'm nearly 80)
My feeling would be "if it ain't broke, don't fix it". Of course the advice of your health care professionals is crucial when it comes to decision making, but we are all individuals and respond to treatments in different ways
Hello Bagrat. If it ain't broke, don't fix it is a pretty good starting point with this and it was interesting to hear that you have been taking Flecainide without a beta-blocker since 2011. Thanks for sharing your experience, it all helps Hubby increase his knowledge of the subject and as they say, knowledge is power!
Much positive advice/ guidance has been provided above and I will not reiterate. However, from my own experience in coming off flecainide probably 12 times in the last 4 years or so (at request of AFib team post ablations and cardioversions) each time caused my SVT/ Ectopics to increase substantially and did cascade into more AFib events. Perhaps your hubby can look at reducing flecainide for a time versus stopping completely and see how he adjusts. Wishing him the very best
Hello listerines and thank you for sharing your experience of coming off Flecainide. As Hubby does have SVT/ectopics (which is why he put on Flecainide in the first place) your experience doesn't fill him with any desire to stop it. Reducing the dosage is an option but it's not one he's keen on; one to discuss with Cardiologist in the Summer.
I note highest HR during 7-day cardiac monitor coincided with AF episode, which is not surprising. 121bpm is not overly high for an AF episode and the Flecainide probably helped to keep a "lid on it"
Does your husband normally feel his ectopics and SVT?
If so, he might have felt palpitations, racing heart etc from AF but dismissed as being SVE and SVT.
14-day Holter will probably tell you more about frequency of AF episodes.
I can't see Flecainide as PIP being practical given potential impact on effectively ceasing treatment of SVE and SVT. Frequency of AF episodes would also determine whether PIP would even normally be considered.
A critical piece of information is why doctors are "alarmed" at use of Flecainide? No doubt all will be revealed in Summer meeting with cardiologist.
Thanks for all your comments throughout this thread bean_counter27.
Yes AF is asymptomatic and it seems that SVTs and ectopics have become asymptomatic too for the vast majority of the time.
In the last 2 or 3 years, Hubby has felt only a few heart rhythm disturbances and they involve a weak erratic pulse for an hour or 2 at a rate of 65/75 bpm (his usual bpm is in the 50s) with no other specific symptoms. It was these episodes which prompted him to seek a 7-day cardiac monitor. We can't remember the last time he felt his heart thumping or racing for no reason.
14 day cardiac monitor in form of Zio Patch being done in the Summer will, as you say, give us a better idea of what is going on. As far as he knows, he hasn't had any AF episodes but who knows....?
Hubby is determined to get a full explanation from Cardiologist of why Flecainide should be stopped and what the effect would be on his other heart rhythm disturbances. I think the Cardiologist was expecting immediate compliance and was not very forthcoming about reasons. Still he agreed to Hubby going away and thinking about it so we are hopeful of a meaningful discussion in the Summer now that we have a lot more information from real folk about the whole subject.
Thanks again for taking the time to provide information to us. I will come back and let you know what happens with the Cardiologist in the Summer.
"expecting immediate compliance and was not very forthcoming about reasons"
Definitely another reason for getting a second opinion. At face value he/she appears arrogant and lacking any empathy for their patient. Doctors need to remember we are more concerned about our health than they are. If they make a sub-optimal decision we're the ones that have to live with it, not them.
I strongly believe all patients need to be able to make informed decisions about their treatment i.e. not have to blindly follow Dr's directions. They talk about shared-decision making but at the end of the day, the final decision should always be the patient's!
Thanks bean_counter. All you say is quite right, that is why we are collecting as much info as we can before seeing the Cardiologist/getting a second opinion.
The replies to this thread have been very helpful from all the contributors and have boosted our confidence to make a decision that Hubby is happiest with. Thanks again to you and all who have posted replies.
Another thought. When hubby has his 14-day Holter, I would suggest he keeps a diary of any heart related observations etc e.g. heart racing, palpitations etc and the date/time they occur. I know he doesn't feel many but it would worthwhile if cardiologist could tell him what is happening in Holter monitor recording around those times so he has an understanding of what he is feeling and whether it includes any AF episodes.
Thanks for that info houghlana these things are never simple are they? With different people having different reactions to medication it's trial and error and Hubby will be taking that on board.
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