Flecainide review?

Hi all, I have Supraventricular Tachycardia. Had the stress treadmill and heart ultrasound yesterday.Cardiologist is putting me on 100mg of Flecainide. I have very serious sensitivities to many drugs and would like to know if anyone is using this drug and what, if any, side effects (even mild) you may be experiencing.
Forearmed is forewarned so I want to find out from as many people if it works for you or not and the side effects.
Cheers!

[Jerry_NJ]

I do not use the drug myself, but I have a friend/colleague who has taking about the same dose for several years (estimate 4 years) to treat his atrial fibrillation/flutter.  We talk about heart problems from time-to-time, he never complains about side-effects, and it seems to hold him in normal sinus rhythm.

Good luck,

[oldtrout466]

Hi I take Flecainide for atrial ectopic beats - though last year I developed alsorts of arrhythmias, not back under control. I am very sensitive to medication so am always very wary!
I take 50mg bd- though i believe the starting dose for SVT is higher at 100 as you say. This is the second spell i have taken it -last time was in 2005/6 when i was on 100, then 75 and then 50.
I have sometimes found it causes a bit of dizziness and at the higher doses fatigue/cognitive 'fuzz' - I manage on 50mg and put up with the odd - perhaps once a day -ectopic. Having said that, when I was on it a few years ago I don't recall any side effects so perhaps it is sometimes difficult to distinguish between the medication and the symptoms of the heart arrhythmia - which also causes dizziness and fatigue! Considering all the dire warnings about Flecainide -I have got on with it very well - I don't take any additional meds with it -In the UK it is normally recommended to take a beta blocker to protect the ventricles - but i would be unable to function due to beta blocker! . It has a sister drug -Propafenone -which is meant to be a bit safer than Flecainide -but it absolutely floored me in the first week of trying it. Cardiologist assures me that as long as my echo's are ok and there is no heart disease Flecainide is fine! Hope that helps.

[redheadaussie]

Thanks guys! I have a cardiologist who in my opinion is a ning nong! No info, no mention of side effects, no worries, no brains! I am SUPER sensitive to most drugs and mentioned this to her but she said, You'll be alright. No stay in hospital to test me out. I have had trips to hospital in an ambulance due to past drug sensitivities after only 2 tablets! She glossed over that totally. Grrrrr.
  Took one this morning and found my heart was probably racing and flittery more so than normal.
I am a thyroid patient too and have HUGE problems keeping my levels well, level! The extreme tiredness  I have now would only get worse on the Flecainide, according to my GP, but the cardio could not have cared less. Even when I told her I sleep 3 hours every afternoon and just 'crash' when I get tired. Double grrrrr.

So I am interested in other people's experiences on this so called wonderful drug!

[Jerry_NJ]

Sorry to read you have such a difficult time with medicines (drugs).  I generally find I have typical to no side-effects, and, sad to say, minimal benefits.  My experience with beta blocker is it does make me tired/fatigue, but I do not require more sleep.  I am an old guy too, that doesn't help much with my energy/enthusiasm deficit.  

On implementation of drugs, my cardiologist and the EP had me on a wearable monitor when I started Rhythmol and would required a hospital stay to start Flec.   I didn't try Flec for that reason and a few years later when my AFib got worse my doctors didn't want to try any "heavy-duty" drugs.  I have an enlarged left Atrium (classic AFib driver) and it was not responsive to a mini-maze procedure done when I underwent heart surgery to repair my mitral valve in 2007.  

All I (think) I know about your medical system is it is "typical" government managed health care (as I read about for most of Europe) and it is difficult to impossible to get moved to another doctor to get a second opinion, or even to change doctors.  But, given your history I think it worth the effort to try to get moved to a different cardiologist or perhaps to a heart hospital.

I go to a cardiologist who is in an association, but not part of a hospital.  My surgeon is also the director of a heart institute at a local hospital.  I could have at that time easily changed my cardiologist to one who practiced out of that institute, but I didn't because it is a few miles further from my home.  Sometimes I think about changing myself.  My cardiologist has pretty much put me on the "shelf"... we are able to control my heart rate with BB and CCB and reduce clot risk with Warfarin (Coumadin) and my symptoms are as much age as heart, so he doesn't see any reason to take any additional risks - and I am now under the  US government medical system for people over 65, Medicare.  This reduces the amount my cardiologist gets paid for services for me - I will guess this reduces the the amount of time he is willing to spend providing service to me.  I am not saying anything about the doctor, my reaction is more one of empathy (based on experience) of what I believe people of all ages in other countries may experience when treated under government health programs.

Sorry for the expansion of your topic, I am just trying to relate to your problem in getting what you feel is sufficient medical attention.

Good luck, and try to be positive but alert - try not to let your past disposition for troubling side-effects make your current try of Flec worse than it has to be.

[oldtrout466]

Hi again. I note from the internet - and comments above that initiating Flecainide requires a hospital stay and continual monitoring in the USA and ? aussie? I did question this with my EP cardiologist -this is not done in the UK because it is based on the study that was done in the early days of Flecainide use when a number of participants died from heart failure taking it BUT they had heart disease eg enlarged hearts etc and should not have been put on Flecainide in the first place. Hence in the UK I had a stress test and echo before i could take it but no need for hospital. Have a ECG 6/12 and an echo yearly whilst on it. So Jerry_NJ -probably a good thing you are not on it. I imagine it may well make things more difficult in combination with the fluctuations caused by varying thyroid levels. If it's any help -it shouldn't make your heart race - it is suppossed to have a better effect at controlling rhythm at higher heart rates. Trouble is -you are bound to be somewhat anxious about the whole thing -so how much is tachycardia from adrenalin is the question! I guess all you can do is put some time aside to try it. Lets us know how it goes.  

[redheadaussie]

This is for both you and Jerry_NJ.
Thank you both for your lovely long follow ups! I appreciate them very much.
NOW onto my follow up. Thursday, felt garbage. Friday felt worse. Sat slept all day with pounding heart and palpitations. Spoke to pharmacist who suggested I call the cardio. On a WEEKEND? Yeah right. Sunday, super revolting to the point I almost called an ambulance but konked out asleep. Monday, total earthquake in my chest. 5 hours of racing heart was ridiculous.
Called Cardiologist, no where to be found. No one knew where she was. Tried one of her other rooms in another suburb and got my head bitten off by the receptionist. I called my GP instead who called me back pretty quickly and told me in no uncertain terms to stop the Tambocor (Flecainide) to call the cardio in morning. WHich I did. AGAIN no one knew where she was. ( Check in the cupboard I suggested.) They leave a message for her somewhere probably tacked onto the back of the toilet door for all I know. No call back.
  Today I call again, now Wednesday. Again the oldCall back tomorrow when she is here. NO I say. I suggest she must have a mobile phone (cell) and they go..errrr daaaah....errrr yeah....They call me back, she'll call me back for sure, today, before close of business. (meaning 5pm) Now 7.30pm  Nothing. Oh and yes, she DID get the message last night to call but it was late. I was like, SO???? Other doctors have rung me up till 9pm! Oh she wouldn't have had her computer... SO????
  Anyway. Have had horrible racing heart again, more so than prior to the tablets. Will call the head office of the group in the morning and kick some bums I think!
  
Our health system runs on two systems actually. One is Private and one is Public. Mostlyyou have to pay out of pocket to see a specialist and you get some money back from the government fund called Medicare (not the same as US medicare) I have private health insurance which means I can choose my own specialist if I desire and go to a private hospital. I can still go to a public hospital and be treated and still request my own specialist. If I was in public hospital and had no private insurance then I don't get the choice. Our doctors here will refer you to who they know or use the most, and if you don't like them you can change, however you have to go through the whole wait for an appointment drama again. Here it can take over 3 months! We just don't have enough specialists!

So this cardio is in a private practice but deals with public and private, but makes no difference to the bill, you still go through the public system to claim back your out of pocket. eg, my first visit was $212, I get back $170. Next visit was $443, I get back $320. Not able to claim on the private insurance. Regardless, you MUST pay up front. I am on a pension and don't have that kind of money up front so makes it difficult.

As I told the cardio I am EXTREMELY sensitive to many drugs, and she OUGHT to have put me in hospital as the USA directive states. I checked here and yes, we too, normally put people in hospital for two days, however it is at the discretion of the treating doctor. Hospital beds are hard to come by and I think she presumed I was a public patient rather than a private patient, (even though I am on a pension I pay that insurance, most don't and have to go through public) Public hospital beds are like hen's teeth. I think she did a stereotyping assumption and  now will be kicked up the rear end by me.
  The one good thing here in Australia is that no matter who you are, you WILL get treated no matter what in an ER or by public health system. You can't pay, that's ok, it won't be totally free but it is the law that they MUST treat you no matter what.

   Ok shall let you know how I get on! Note to others: DO NOT TAKE FLECAINIDE/TAMBOCOR!!!!!  Might work for some but for me my warning bell should have gone off the first pill I took. Next time I will be more adamant!

[Kenny1948]

I have been on Flecainide for almost three years.  I am taking 50mg twice a day, for Atrial Fibrillation.  At first I was terrified, after reading about the possible side effects, but up until now it has been a wonder drug for me.  I had no recurrence of the Afib.
However I have just recently started having bouts of PVC's and am wondering if it could be from the Flecainide.  I went to emergency the other day, with a prolonged period of PVC's.  They did a heart catheter procedure, and it showed no abnormalities.  So they sent me home.  I am still curious about the Flecainide.  They did question my cardiologists choice of this drug, ad it can cause other erratic heart rhythms.  So now I get to wait and see.  I wish you luck.

[Kenny1948]

I didn't want to comment on your particular situation, but since others have I feel I must.  Too many people here in the US are wary of "socialized medicine" there is so much propaganda about it on the tv and written media. Fact is I have the same problems with my cardiologist.  He dismisses most of my problems, and yes he was assigned to me by the hospital.  If you are Rich and can afford to choose any doctor you want, that's all fine and well.  But here in the US if you do not have excessive amounts of income, or do not have insurance ( I was unable to get it because of pre-existing conditions ) you don't have much choice!  I would gladly take your government run system, over what I have here!

[Kenny1948]

I might also add, under "Obamacare" I can get insurance even with my so called "pre -existing condition" which is that I had Hepatitis forty years ago!
Although I can now get insurance, the cost is so much.  That I cannot afford it, and it still wouldn't cover my Afib, because that too, is now a "pre-existing condition".  They can't exclude you for insurance, but they can still exclude your condition from coverage!

[JoKelly]

I took Flecainide 25mg twice daily and got four months free from atrial fibrillation.  Then the AF returned and it was doubled in dosage to 50 mg twice daily and so far another month free from AF.  I am intolerant of Warfarin and refuse to take it, although I know I am at risk without proper anti-coagulation, but remember, no one can force you to take anything.

Flecainide is a drug where you can feel its effects within half an hour.  In my case it is slight faintness, a feeling of congestion in my head and some hot flushes rather like menopause.  Then it settles.  I think fatigue is something all of us with heart complaints can take as read.  If you are new to it, then request the smallest dosage to begin with and see how you go.  I don't expect everybody has the same reactions and you can only test and try.

[oldtrout466]

Sorry to hear you have had such a rough time with it -I do hope you get a call back and some answers/advice soon. I'll keep looking.

[oldtrout466]

Hi - It seems Flecainide is one of those fairly controvertial drugs people either get on with or don't!.
Earlier this year i remember hearing something about a new alternative to Warfarin - and it has been approved by NICE. Might be worth a look

http://www.pulsetoday.co.uk/newsarticle-content/-/article_display_list/13642804/gps-face-curb-on-warfarin-alternative-as-ccgs-warn-of-soaring-drug-bills

[JoKelly]

The alternative you are mentioning is Pradaxa (dabigatran) which has been approved by NICE for the NHS here in UK.  Just try getting it however, my doctor refuses to prescribe it so I have a letter from the Dept of Health, saying it is my right to have it.  Have passed it on.  There is a whole industry built up around Warfarin, its cheapness and INR testing, and I am sure this is a matter of budget maintenance, as Pradaxa is much more expensive.  Prescribe it for one and all the Warfarin takers will want it - it has no dietary restrictions, no blood testing or monitoring. However, the risk of bleeds is increased and there is no antidote for this, unlike Warfarin.  Watch this space with the NHS!

[oldtrout466]

Keep trying - the criteria does say it is only for people who can't take warfarin -which you would fit! Mind you i suppose the extra risk re bleeding is a serious factor to consider. Sounds like you know how to fight the issue -but if you haven't done so, write to the Chief Exec of the PCT with the Dept of Health letter - esp before they hand the budgets over to GP commissioning groups (God help us all!)

[redheadaussie]

Hi all again! Well, after a whole day yesterday of toing and froing phone calls, the manager of the group was most empathetic and was totally disgusted with the treatment I have received. Seems I have opened a can of worms!
Managerial level is furious I was unable to get my cardiologist to call me back immediately. AT 120bpm I could barely catch my breath when trying to explain my situation let alone having to explain why I had to call almost every rooms in the group all over Melbourne! So they are rolling heads as we speak. So that was a good thing!

Turns out I have an enzyme deficiency called CYPD26, if you have this problem many drugs will over work, or under work. I was on 5 Effexor tablets to get it to work, years ago. I throw up with Stemetil. Many of the anesthetics I wake up with rather than konk out to. ...and so on....guess what? Flecainide/Tambocor is on the list of those drugs where CYPD26 can cause issues!!!

I was given an appointment today to see the Head Honcho cardiologist of the group, who apologised profusely at the lack of good care and the lack of understanding by the first cardio when I warned her I am super sensitive. Moving along, he said to go see his good mate an Electrophysiologist as he believes my intolerance to drugs will not fix this problem. He believes that I more than likely have Supraventricular Tachycardia, however he also is not ruling out atrial fibrillation. Tambocor is normally prescribed for atrial fibrillation rather than SVT but it can be used for that as well. He was intelligent enough to state that the enzyme issue is highly likely why I did not tolerate it well.

He has prescribed Cardizem with a disclaimer, to try it for a short time and if I have ANY issues to call his personal mobile phone and tell him so! He knows that it is more a high blood pressure drug and I do not have that, but he feels it might help till I see the EP. I have an appointment 'expediated' by him on the 27th June. So will be interesting!
He believes that ablation is the best treatment at this time.

Many complain about the health system here but having been to USA and Canada 3 times now, and having many friends there, and knowing of the UK system, I feel I am lucky. It does cost a bit to have private health insurance but not really out of the realm of most working people. Just most Aussies have this attitude of getting something for nothing, and won't pay it. I have seen many doctors over my lifetime and would not be without it!

So long story short, I know the genetic enzyme testing is expensive here but I am definitely going to have it done, to A, prove a point after all these years of adverse drug interactions and side effects and B to know in the future which drugs I can avoid and just get on with being well!

[oldtrout466]

Phew - you must be exhausted - but at least some way towards getting the problem addressed. Let us know how it goes.

[Me967]

Best of wishes to you.  I don't know if they told you or not; but, I think that is one that you can't have any grapefruit with.  My dear friend it sounds like we are going threw a lot of the same issues sort of.   I have finished with my heart test; but, having a hard time understanding why I'm still feeling the way I am and trying to get used to a couple of new drugs.  By george they DID knock my HR down though.  lol  Anyhow, I just wanted to let you know I'm praying and sending good energy your way for the best of best results.  :-)

[redheadaussie]

Months later now and just a quick follow up in case anyone was wondering. I was taken off the Flecainide and then given the Cardizem which all it did was make me be relieved of my severe Raynaud's Syndrome in my hands which was WONDERFUL, but did nothing for my heart problem.
Went back to the cardio and in his professional opinion decided try me on an event monitor to capture an event so he could figure out once and for all what I have. Well, I got the dreaded Flu that week, had severe reactions to the sticky pads and basically did not capture the events needed. His response, You probably have something but never mind, just when it happens again go to hospital. It's 45 minutes away. Oh, then go to pathology to get them to do an ECG. What if it happens at night or on a Sunday when they are closed? Oh, I dunno, some how you will manage. Me exiting with long face and crying in the car was the start of a major depression which has lasted longer than normal.....sigh.....
Anyhoosies, I also discovered not long after that my never ending stupid thyroid levels went hyper. So, called him and he said, 'Ah! That's what the problem is!' Oh yeah, like we never discussed my thyroid issues on day one??? I was super HYPO when I saw him! Gah!
Anyway, had other health issues and still having bongo drum palps but not as bad as previously. I gave up alcohol and then tried it again, even one glass sets my heart off, so am now learning to live with the the arrythmias and palps. Hope you are all well! Cheers.