So I was given flecainide as a PIP 14 months ago but have not had occasion to use it. Take 50mg. Then 50mg two hours later if not resolved in 24 hours come into hospital .
Husband is wanting to plan summer holiday in Greece but I am apprehensive about potentially taking Flecainide either on the plane or a Greek island ( experienced a Greek hospital for husband before, not serious fortunately ) Greek hospitals not good and wouldn’t want my heart in their hands if I could help it
An alternative to taking the Flecainide would be sitting the AF out for 24 hours and seeing if it stopped like before. Pulse 170-180 not a lot of fun
Any advice would be very welcome 🙏
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Peony4575
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The difference was that if I did not convert after the second dose, I was to take rate control medications to get my heart rate down to around 100 where I could go about light activities in a normal fashion .
Then, if I did not convert within three days, I was to call my EP to consider electro version.
What I liked about my plan versus yours was that it saved the trip to the A&E. Not a nice trip, even locally, and certainly not when traveling, especially if you do not have confidence in the hospitals there.
I would talk to your doctor about revising your plan.
Problem is I can’t take beta blockers . I could in an emergency but my heart goes haywire for months afterwards and I really don’t want to put heart or me through that Jim . I did tolerate the high heart rate well according to the medical staff but it is unpleasant and not keen to stay that high longer than I have to . Am due a review with cardiologist although no sign of an appointment yet. I will see what she says. Thank you for your input
I also don't tolerate beta blockers. My rate control medication was Diltiazem.
If you cannot tolerate any rate control medications, then I understand and fully support your doctors admonition to go to the hospital.
Some here will tell you no big deal, but having an uncontrolled heart rate of 170 -180 for more than a few hours can be unsafe and prudence dictates medical intervention.
I was allowed up to 150 mg of PIP flecainide in stages and some here have even been allowed up to 300mg. The higher dose would give you a better chance of converting.
But I'm guessing the reason your doctor is keeping you on such a low PIP dose is because you're not taking it with a beta blocker for protection. Again, Diltiazem could be substituted for a beta blocker here, but you would probably have to take it all the time since my understanding is that the fast release form is not available in the UK, like it is in the US.
If all else fails, maybe consider another holiday destination. I also had a horror non-afib medical story on a Greek island many years ago.
Thanks Jim the other problem is my HR and BP are on the low side to start with so not taking anything I don’t need all the time while AF episodes are so spaced . I would prefer to go to Italy but husband is of Greek heritage and likes to go to Greece . I may push for first trip to be to Spain as flight time about third of the time . Thank you for your help
You won't want Diltiazem as a rate controller then. It's also a vasodilator. My thinking is - do Italy this time. If you haven't trialed the PiP strategy yet I think you'd be wise to go to a country where the hospitals are more reliable. Bit of advice re Flecainide - works better away from food so if your AF kicks off soon after eating, maybe try to wait a bit. I know it's not always how things go but you may find it's not very effective otherwise. I used to sit it out for an hour, then take the 50mg.
Many thanks good advice . Will note the food thing . I would prefer to go to Italy but husband is of Greek heritage and likes to go to Greece so am stuck with it . Scandinavia would be my choice ! I will be very careful re triggers etc
Hi, I have PAF and have been in chem-cardio version for nearly 5 years - daily Flecainide, which I am now slowly titrating to see if I can maintain NSR without it. So far the daily medication has kept me in NSR approaching 4 years with no sustained episodes.
I’ve also have a PiP back up too. If an episode occurs - 1) extra Flecainide plus a beta blocker 2) wait 1.5 hours, if not converted take another dose of Flecainide. Like yourself, I have not had cause to use the PiP.
Admittedly it would be nice to know the PiP is effective but obviously it would mean more Afib; no thanks. This is not going to deter me from travelling though!
Amongst items for trip prep, I always - 1) have good travel insurance 2) research area/city/country to find good hospitals/clinics (usually private). Then enjoy my holiday.
Those are good points in terms of top drawer insurance and researching hospitals etc thank you.I have already looked at which Greek islands have decent hospitals, and there are destinations close to Athens . What worries me is less will flecainide effective as what if I have an adverse event when taking it for the first time
That’s a fair point, I understand your trepidation. The Flecainide has been fantastic for me, no side effects and it has kept my Afib at bay for quite a while. That said, I am on a relatively ‘low’ dose but my PiP can take me up to 300mg. I have tolerated it well so far but I cannot be sure of the reaction at the higher dose. I’m not going to worry about it and would rather continue living and doing what I want.
When I had paroxysmal AF I was prescribed 300mg a day, every day, of Flecainide, for 10 years .It decreased my episodes to 1 or 2 ten-minutes episodesa year. I had no side effects. For AF I had no other medication.I don't understand why you are apprehensive about taking it on holiday.
Because I have never taken it it before and as Ramblers post shows it is possible to have a dangerous potentially fatal reaction to it it, and you don’t know if that will be you until you try. I don’t understand why anyone who has read the data sheet would not be apprehensive taking it for the first time in a foreign country
I have now downloaded the information sheet. I cannot see anything on it which would prevent me from taking Flecainide .Yes there are rare and very rare side effects of most drugs. I had both a rare and very rare side effect of Bisoprolol, not immediately, but after I'd taken it for 11 weeks. The rare side effects put me in hospital for 3 days, but 50mg of Flecainide is a very low dose.
AF in itself is not life threatening, but, because your blood, during AF, does not flow evenly, blood is more likely to clot, so to lower the chances of getting a stroke we take anticoagulants. I prefer tried and tested Warfarin.
You could take one 50mg tablet today, to see what its effect is.
Health concerns trumps an overseas holiday especially when anxiety is involved. I know I continue to turn down free accommodation in the Austrian Alps (misspent youth!) for that very reason. Go for longer next year.
Not sure my experience adds anything but:
My cardiologist put me on just daily Flecainide (at 60 yo), said the usual accompanying BB would make me feel unwell (lowish pulse & BP) and at my last annual check-up said the older you are (I'm 70 now) the less the danger of a sudden high HR as a result of no BB.
Thank you . Am 68 but my HR during episodes has been 170-180. and when they gave me beta blockers it didn’t make much difference . Apparently my heart coped well but I would rather it didn’t have to. I agree I would pass on the foreign holiday but on the face of it I am fit enough and don’t want to deprive husband . If the Flecainide worked that would be great , it’s the what ifs that are causing the problem
I had my first dose of Flecainide by iv in hospital. My bed was also wheeled next to the nurses station so they could keep an eye on me. Thankfully all was well and I was discharged the next day with the tablet form which I have been on ever since, 50mg x 2 daily for 18 years without a beta blocker. Protocol May have changed in that time but then, the first dose of Flecainide was only given in hospital or clinic under medical supervision.
Personally I wouldn’t want to take a such strong drug as Flecainide for the first time in a foreign country. I’m not even sure where you would stand with travel insurance. I agree with secondtry, health trumps an overseas holiday… for trying a new drug I mean. I have flown long and short haul on holiday since diagnosis and been absolutely fine.
Indeed everyone used to take flecainide for the first time on a cardiac monitor but I guess the shortage of beds put an end to that and they rely on the fact that most people with a structurally sound heart are ok on it
Thank you I would like it to be be my best friend too . I wouldnt be worrying if I had tried it before in this country . My episodes are very infrequent so the chances are I wouldn’t have an episode during that particular week. I am inexperienced having had only two episodes
IMO that's a rather low PIP dose. My prescribed PIP regime that worked well for about 5 years which was to take 2 x 100mg Flecainide at the onset of AF, wait 6hrs, if not reverted to NSR take another 100mg. I usually reverted within 2-3 hours of first dose. Occasionally I needed the second dose but never had to wait more than another hour for NSR to return. But gradually, over a number of years, my AF episodes became more and more frequent until they started occurring every few weeks. At that point I was swapped to a "background" preventative dose of 2 x 50 mg/day Flecainide which worked well for another 5 years with no AF, but then episodes started occurring again, so I would take a PIP booster dose (100mg) which would sort it within a few hours. As the condition progressed my "background" dose was increased to 3 x 50mg / day but I started getting numbness in feet so had an ablation 2 years ago which has worked well. I've now weaned myself off flecainide, so I'm drug and AF free at the moment.
It is a low dose but as I have never taken it before it probably makes sense to go in with the lowest dose to see how I react with the option to increase it later if necessary . Thank you
Flecainide has been very useful for me. (Much better than Sotalol which I hated). The main side effect I had was tinnitus which started soon after taking the daily dose, but I could put up with that to avoid AF. The other possible side effect that started after taking 150mg /day was some numbness in my feet. Unfortunately both the tinnitus and numbness haven't yet gone away, even though I've been completely off Flecainide for a couple of months now. But it's early days.
personally I found flecainide a miracle drug with no side effects just relief from Afib. That taken with bisoprolol for tachycardia great
Mind you I take 50 twice a day. Before I had my pacemaker if rarely I did have a problem then I took extra
Go snd enjoy your holiday. If you haven’t had an attack for 14 months there is no reason you should have one on holiday. Take it easy, don’t stress and enjoy
I take flecanide 100mg twice daily. Absolutely fine. Doesn't always keep an episode away but I don't feel bad when I do have one. Feels like a wobbly jelly in my chest lol and heart rate hovers sound 120 max with an occasional sore off 140.Think you need to learn your triggers.. stress can set mine off . Or go to the Dr and ask his advice and adviceexpress your concerns. Life is too short.. enjoy your self . All this worry will set you off.
As it is anti arrhythmic med. It can control your AF back into sinus or make your AF worst.
As you haven't yet proved what it will do, of course you are apprehensive.
But you must take it with you.
How long away?
Loose the anxiety and I'm sure you will be OK. Anyway you won't have time to be anxious.
I've booked Japan for October and it will be my first overseas trip since I was diagnosed with rapid and persistent AF with a stroke. Of course with travel insurance.
The first hurdle is that I was called back after my 4th neck scan to check the papillary thyroid cancer is not back. Then radiographist recommended that the surgeon refer me for a CT scan and it was with dye.
Still waiting. Will my world be broken again? I have controlled h/rate and AF for 2.3 years. Thyroid and 12 right lymph nodes removed with 2 affected.
Thank you for that Joy. You are very positive and I hope all goes well for you . I try to avoid drugs as much as possible only on Edoxaban so far . I would go equipped with flecainide, 2 Kardia and I pay for the advanced diagnosis thing although I don’t use it. Good travel insurance . It would be between 3 and 5and a half hours depending where I go and have checked which islands have hospital. I need to find and mobilise my fuckitt 🤣 and go
My flight Bay of Islands 6am to Auckland 40 mins then I think 17 hours including the night to Tokyo.
Having a direct flight best.
Then $180 taxi to Hotel.
The main thing is to forget about your medical diagnosis and enjoy. And early to bed and early rise.
I worry about a sagging bed as I have a bad back! And under requests I ask for a firm mattress. I've been known to sleep across the bed!
Joke about and dream that all will be well. I think you are going for a week. I'm going for 15 days.
Take your prayers with you. I have never been to Spain but after working in UK 6 years, I loved Crete and the Samaria Gorge (take sturdy walking boots) the people love us, and Italy whow. Loved Portugal too.
I never let AF stop me from travelling and enjoying trips. I used to take Flec as a PIP but took 200mg straight away, which mostly worked. I’ve had AF on small yachts, boats, planes, trains and cars. Worrying about what might happen is different to preparing for something if it does - make an ‘in case’ plan.
The main thing is to avoid triggers - don’t overdo things, take your time travelling and never rush, if you are aware of food/drink triggers be ultra careful for first few days. Altitude was dreadful for me, walking uphill impossible, as was of all things bread! If an episode hits - wherever you are or doing, stop, rest, remain ultra calm and relaxed and practice breathing - slow and deep, keep very well hydrated, maybe with electrolyte drinks and take the Flec within an hour of AF starting - on an empty stomach otherwise it could make you feel nauseous.
If you are staying in one place and it helps to reassure you, know where the local hospital is and have excellent travel insurance which covers you for private hospitals - costs more but well worth it in some countries!
Have a great holiday.
PS - I can’t take Beta Blockers either so ensure you take a Doctor’s letter with you that says NO to Beta Blockers and a copy of all your prescriptions, digitally and on paper.
Thanks cDreamer all excellent advice . I do know my triggers and avoid them assiduously but always trickier on holiday when you are eating out the whole time and not preparing your own food.
Hi, I have supra ventricular ectopics (take 2.5mg Nebevilol daily) and PAF. My cardio prescribed 200mg Flecanide to be taken as soon as AF starts. I was terrified of taking it! (cardiologist couldn’t understand why…If have a structurally sound heart and have had the echo etc it’s fine). We have a house in Spain so are abroad a lot…. I was especially concerned about taking it there for the first time as our house is in the middle of nowhere. When I took them for the first time I literally swallowed them and sat & waited for my heart to stop!! To my surprise I was absolutely ok! My AF stopped within 45 mins….have taken them a few times since and always ok. I’ve even taken them when I thought I was in AF and I wasn’t and always fine. I’m not worried about Flecanide anymore, I can’t get it down quick enough when I get an attack. If your cardiologist says your heart is structurally sound then I wouldn’t worry too much…. mine said it was fine to try them at home when didn’t have AF, just to trial them if it put my mind to rest as like you I was terrified of taking them abroad for the first time. I’m so grateful for the flecanide….now I just need to sort the ectopics! All the best…
hiya I had flecanide as pip for a couple of years but never took it. Then beginning of 2023 afib was coming thick and fast and by April/May had to start taking it daily. We were due to go to Budapest and I was worried about not being well. We went anyway and I continued to use it. I was absolutely fine and it kept me in rhythm. I have since had a mini maze in Sheffield with Mr Steven Hunter and in NSR and recovering 4 weeks on. I’m sure flecanide will do the trick for you while you’re away. Best wishes.
Thank you for that . Would be interested to know about your mini maze experience . My ideal would be to go and AF to stay at home ! Am not getting it a passport ! Very reassuring 😊
That would be a nice idea to leave the dreaded AF at home. I was due to go to a Japan to have mini maze but decided to contact Mr Hunter in Sheffield. So far so good.
That's a very low dose of Flecainide for a PiP. Since you say that your heart structure is sound I really wonder what the reason for that is? I have good heart health other than the AFib and am very sensitive to medication in general. I don't take any daily meds for my aFib or tolerate beta blockers because my normal HR and BP are low normal so it sounds on paper like you and I are somewhat similar.
My cardiologist prescribed me Flecainide as PiP and initially wrote the scrip for 200 mg tablets but I - always cautious with meds - asked for 100mg tablets which he did, but said 'that's very low'. What I've found is that 200mgs will stop my AFib in about an hour. I've tried several times to start off with a lower dose but hours later it hasn't worked and when I top it up to 200mgs it works so I came to the conclusion that there's no point in messing about and now go straight to the 200mgs, which has (touch wood) never failed me.
Perhaps it's worth your having a conversation with your EP/cardio about the dosage of your PiP? Bearing in mind that folks on daily Flec are taking minimum 50mgs twice a day, often 100 twice a day.
Thank you but no thank you . If I am going to try a drug for the first time I would rather start on the lowest dose and titrate up as necessary . Safest route so happy with EPs decision. As you say I am sensitive to drugs and have had bad experiences in the past so I really would prefer to be cautious. Interesting to read your experience and would love something that would stop it in an hour. Both episodes lasted 24 hours despite treatment in hospital
I am in a similar situation, had scan with dye to check all ok (waiting for results) with flecainide PIP in mind until pulse field ablation (on list).I'm of the same mind- start low. EP I spoke (who happened to be Greek)to, said take 50mg to start with, then if not in NSR in half an hour, take same again , continue up to 300mg then stop . Unsure if this is how others do it. I will confirm this with prescribing consultant.
Arrhythmia nurse said to try first time in A & E, ( I will confirm this )so I can relate to your concern.
I also have low tolerance to meds, only on thinners. HR and BP are spot on - low side when in NSR. BB's wiped me out.
I too hope to revisit Crete which I love. The way things are going with NHS. I may have a touch more confidence in the hospitals on the continent.
😊🙄 I am thinking if I do need to take flecainide abroad for the first time I might well sit in the hospital car park with my Kardia to hand ! A friend who used to be a cardiac nurse told me she wouldn’t take it unless she was on a cardiac monitor. I know the vast majority with structurally sound hearts are fine when they take it but it’s scant consolation if you are the one that isn’t ! My EP said take 50mg then 50mg two hours later then if still not settled in 34 hours go into hospital . I think they all have their own way of doing it.
why not check with cardiologist and try it now before you go 50mg once in the morning and night for a couple of days and see how you go maybe with a calcium channel blocker as mentioned by others. I was cardioverted close to a month ago and am in Sinus now and taking 25mg to help heart rhythm settle. Cardiologist usually asks his patients to take a week before CV them 1-2 months after. I then go back to PIP concept
Glad you are getting better hope NSR holds for you . I can see a trial makes sense. All is quiet on the cardiac front at the moment so won’t take anything unless necessary . One day of beta blockers gave me months of arrythmia
That’s unfortunate maybe ask about calcium channel blocker. Hope you get it sorted Greek islands are beautiful I’ve been and carry my tablets for 3 weeks but didn’t need them! Ask your doctor what he thinks of a trial of Flecainide before you go at least you’ll know and it might remover a lot of anxiety knowing there’s no bad reactions. At least if you have a reaction at home you have good doctor’s nearby
Yes . I don’t want another AF episode obviously but knowing you have a pip that works and you don’t react adversely to would be a great comfort . I would much rather have trialed it at home
When I was first prescribed Flecainide it was to take 100mg as a PIP and to add 1.25 of Bisoprolol if my heart rate was over 140 twenty minutes later which it rarely was. Episodes never lasted more than a few hours but as I experienced more of them I was put on 50 mg twice daily and now 100mg twice daily and I haven’t had an episode for well over a year now. Good luck finding what works for you!
Remember that we are all different though - I’m 80 and this and chronic fatigue didn’t strike until around five years ago. My heart is structurally sound too.
I was told to take 300mg as a pip which l took in hospital the 1st time. It worked within half an hour as it shocked my heart backto n.s.r. The next time l took it at home . As l was nervous of taking such a large amount , l took 150 mg which didn't work. I ended up in hospital as my pulse rate was 180 to 250 and l feltvery ill. I was given another 150mg which still didn't work. When you are taking flecanide as a pip rather than daily l think you need a larger amount for it to work. My heart was sound at that time apart from a.f. l was ony taking an anticoagulant. I had no after effects from taking the flecanide. I tend to ride out a.f. episodes at home now. I would rather do that than go to A&E as all they do is monitor you.
I get a high heart rate it’s very unpleasant . Do you ride it out at home without taking drugs or do you still take flec ? Agree with you re a&e. My two trips they gave me drugs but I don’t think they made any difference . I flipped back after 24 hours both times
I have been on pill in the pocket for over 20 years now and have travelled all over and had to take flecainide with no problem, planes as well. I assume you are on anticoagulants. All I find is that when you do take the PIP sometimes you need to sit down or lay down for awhile when your heart goes back into rhythm as your BP tends to drop and can make you feel faint.
Thanks for that . BP on the lower side anyway so I can see how that could be a problem . Yes am on Edoxaban . Biggest worry on plane is having to use the loo all the time !
You obviously need to discuss your concerns and options with your EP. He/she might have a solution for you. If not, then you need to determine what you would be comfortable doing. There's not much use going on a holiday if you are going to be worrying 24/7 about the possibility of having an AF episode or even worse, having one that ends up realising your worst nightmare.
You need to ensure you can enjoy your holiday and for it to be something you are looking forward to. If you can't then it's probably not worth going.
I hope you come up with a plan that's workable for you and your husband.
Thanks . I have to consider him also . Not fair to restrict his life . I should be seeing the EP in the next couple of months so I will have a further word
Hi Peony. You could be talking about me !! I too am going to Greece and I have never take Flecainide but have been given it as a PIP. I am on diltiazem,edexoban and rampril for BP. I have been told to take 300mg !! If I have an episode but like you am too scared as never taken it before. I have never seen a cardiologist am on a waiting list ! I was on Bisoprolol but was taken off as have asthma and should have never been put on it in the first place but a visit to A/E they told me this and put me on Diltiazem. Good job I never too the Flecainide because to protect the heart you must be on Diltiazem or a similar drug of which Bisoprolol not one of them. So like you I am very worried and totally understand where you are coming from.
Sorry you also have the dilemma but helps to have a worry buddy 😊 I have seen the EP and had the echo etc . I should be seeing her again before I go NHS willing . Am saying to myself , they have people with AF in Greece they must know what they are doing 😆 . You can take flec without rate control but more usual with . Am definitely picking an island with a hospital and Corfu is the shortest flight time so will probably pick there. Have been to many of the islands over the years but haven’t travelled abroad since AF diagnosis
Currently I take 120mg of diltiazem and 300mg dabigatran.
I have monthly episodes, for which I take an additional 60mg of diltiazem as a PIP - this brings my HR down, and I usually revert to NSR within 4 hrs. (No side effects).
I have recently had a discussion with my consultant about using Flecainide (if tests show I am suitable) as a PIP to reduce the time and number of episodes.
Prior to diagnosis last year, unbeknown to me I, suffered PAF for a number of years believing it to be indigestion, or anxiety as per local GP’s diagnosis. (ECG was always NSR)
Every year having no prior diagnosis or knowledge of my condition we went on holiday to the Spanish Islands. I was drinking alcohol, basking in the heat (used to drink loads of water) and eating later in the evening.
I used indigestion remedies to try and alleviate my symptoms.
I was very fortunate that I suffered no adverse effects with undiagnosed AF.
I suppose ignorance is bliss, therefore I suffered very little anxiety to compound symptoms.
Since diagnosis, and prescribed medications-my anxiety is worse because I now have knowledge of the beast I am dealing with.
We are going back to our favourite island next month.
I have my meds, and insurance in place - so on paper, I am better protected than previously. Plus, I no longer take alcohol, or caffeine and I don’t eat heavy meals after 6pm.
I would certainly speak to your consultant and voice your concerns.
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