AF Association
13,619 members16,498 posts

Afib now permanent so would it be safe to stop taking Tambocor (Flecainide)

Hello,

For the past 20 years I have been taking Tambocor to control Afib however my heart has now gone into from four days on normal heart beat and six days of afib episodes to having Afib full time with no respite. As the medication has no effect I am thinking of going off the tablets as they are now of no use.

My Doctor was not prepared to give me an opinion(In other words did not know) so has anyone given up this type of medication.

Regards

Ron

21 Replies
oldestnewest

Are you seeing a specialist? I have changed drugs because what worked 15 years ago doesn’t now, or not properly. My EP had to try me on various drugs before finding a new one that worked well.

2 likes
Reply

I guess you are not asking an EP for the opinion. You should speak to your EP Consultant as he should be able to advise you.

I don’t think any members of this forum have the qualifications to advise you. If nothing else we are all different.

Pete

3 likes
Reply

Wow, 20 years!? I'm assuming thete is some reason you haven't had an ablation before now. Getting off flecainide was main reason for mine, after less than a year trying medication (that wasn't very effective either). You should be seeing an EP (electrophysioligist) for making those decisions, if not already under one's care.

2 likes
Reply

I am now 77 years old. At first the medication worked but after episodes became more frequent I had two ablations over the the years then in the past three years I started having episodes that lasted 6 days and then would go back to normal for four days. In the last 6 months the afib is now permanent. My specialists told me that there is nothing more that they can do for me that is why I was asking if anyone else had gone into permanent fib and was taken off the medication. I can't see what the purpose is to continue on with it.

Thank you for your thoughts.

Reply

Well, that is perplexing, I'm sure. Perhaps a second opinion by a different EP is in order. Hard to live with permanent AF!

Reply

I would not use the word "permanent" if you have been in continuous AF for six months. The terminology is probably for you six months persistent. If you were to read Haissaguerre, you would perhaps have four targeted areas to ablate although since you've had two ablations some of these areas have already been ablated but signals are still getting through.

You use the plural "specialists" indicating two or more EP's. But, were they in the same hospital/department with the same mindset? It would be wise to go to a completely different place for another evaluation.

Time is of the essence here. If your persistent time reaches one year, you are then long-standing persistent with seven targeted areas. Generally the word "permanent " is applied when both you and your doctors agree that nothing more can be done. I get the impression that you would still like to get out of AF, so move quickly before you do go into permanent.

1 like
Reply

As others have already stated, you should be advised by a specialist. Flecainide (Tambacor) is a heart rhythm drug so if it isn’t keeping your heart in rhythm it isn’t doing it’s job.

Coming off any meds after such a long period without expert medical advice would not be recommended and not something we should advise on.

I also am rather surprised you have been taking this drug so long - I do hope you have had regular blood checks and also take an anticoagulant?

It is your doctor’s job to advise you and if beyond their competence range then to refer you to a specialist who can advise.

Best wishes.

3 likes
Reply

Thank you for your comments.

I have discussed this with two heart specialist even saying to them that I find it hard to believe that Tambocor is the only medication available in Australia to treat this problem however they have not responded with any alternatives that is why I am getting fed up with this whole thing.

I do have regular blood tests but at the moment they have taken me off he anticoagulant I was taking due to a very low blood count and they are investigating the possibility that I have some internal bleeding. I have had some blood and iron transfusions. I have had an endoscopy which showed nothing and this Monday coming I have a meeting at the hospital to discuss the next step.

I must say that I am very much appreciative of the advise and comments I have had since my posting which shows I am not alone.

Regards and thank you.

1 like
Reply

I am in Australia and when first seen by the specialist he was astonished I was on Sotalol and changed it to Tambocor .

I found Sotalol next to useless as it didnt stop me going into Afib and its side effects were quite nasty. For you it maybe different , but I would never use Sotalol again , rather have an ablation.

1 like
Reply

I was on Flecainide (Tambocor) for around 20 years. When it ceased to be effective I had an ablation and am now free of AF. You really need to see an EP as soon as possible for guidance.

Peter

3 likes
Reply

Morning Ron, sorry to hear you are now in permanent AF even though on Flecainide.

Now please listen to me (the queen of stopping meds when I felt like it and thinking quite wrongly, that I knew best). You may believe that Flec isn't helping your AF, but do you really know that? What if you came off it and your AF was even worse?

Really you need expert advice, on what type of medication may help you now, from an electrophysiologist (EP) or your AF nurse. Ask your doctor to refer you to one as he doesn't seem able to advise you what to do now. Have you ever considered having an ablation (where they zap the areas of the heart that are allowing rogue pulses to come through)?

I hope you soon find a solution.

Best wishes

Jean

4 likes
Reply

I find the question quite reasonable. At the very least, when you go to your doctor you should be able to evaluate their advice, and you should know the questions to ask, and which you prefer among likely options.

I think you will find that Flecainide is great for prophylaxis for some types of AF. But, once AF sets in, the real objective is to reduce the rate to less than 120. Irregularities are less important so Flecainide is no longer useful. I got that message from Dr Sanja Gupta videos, which are often mentioned in this forum. There are many rate controllers each with their quirks and individual tolerances.

3 likes
Reply

I am not a doctor, but I would, as an AF sufferer myself, STRONGLY advise against stopping your medication without proper professional advice, e.g. from a cardiologist, if your GP can't/won't help. You cannot know what the effect might be, but if you are in continuous AFib, i think you should be seeing a cardio Dr anyway, without delay.

My consultant, here in Spain, signed me off in January, because my AF is mild and very sporadic(touch wood!), but with the instructions to contact him directly if I was concerned about my condition. As my GP is a bit of a dead loss, I personally would certainly do that .... although it might be fun trying to get past the hospital receptionists !!

Good luck.

Roger

1 like
Reply

Hi Roger, I live in Spain too, and have only recently been having severe episodes of AF and ectopics, enough to send me to Urgencies 4 times in 6 weeks. It can be a bit of a battle with the hospital hierarchy if you aren’t fluent with Spanish. I have seen cardiologist once, then I have AF clinic in 3 weeks, with a view to ablation, which I am quite nervous about with the language barrier. My Spanish gets me by, (I am taking lessons) in day to day scenarios, but the medical issues are a bit daunting sometimes. 😟

Reply

In fact I have been on Tambocor (Flecainide) (Rhythm control drug) for around 25 years and despite currently being in NSR after numerous ablations I am still on a dose of 150mg x 2 per day.

I was told I stop Bisoprolol (rate control drug) earlier this year.

We are all different but as I am in NSR for the longest I have been for years I would be scared to stop Flecainide even if I am told to when I next see my EP in December.

Pete

2 likes
Reply

My ablation was considered successful but I still take 50 mg 2x per day of Flec to control eotopica. However, I’ve been instructed that I still need to take a rate control drug in addition to Flec as I’m told that Flec should not be taken by itself. Might want to double check on that.

Reply

We are all told different things. Specialists have said at various talks I have been to that the priority is first to anti-coagulate, after that all therapies are for QOL - but first try rate control and then rythmn control - in that order but rate control didn’t help me at all and I have taken Flec alone and it worked for me but I do know that some doctors like you to take rate control as well as rhythm

We are all very different and respond differently. Whatever, adjusting meds without medical advice is not a good idea.

1 like
Reply

No problem as I was taken off Bisoprolol because I have heart block (bad conductivity between atrium and ventrical) and was getting Bradycardia.

Thanks for your concern all the same.

Pete

Reply

I was put on flecainide by itself by my ep. He specifically said i should not take rate control drugs!

Reply

My mother was on Tikosyn and digoxin for over 5 yrs and both helped at first. Her cardiologist was not keen about taking her off both because he was afraid she would have even more episodes of afib. We decided to see an EP doctor as my mother felt that she had developed an immunity to these drugs and she hates taking medication anyway. The EP took her off both drugs the first visit with her, stating she had been on the drugs far too long to be benificial to her. She stayed on Metoprolol, losartan, Eliquis, magnesium and Lasix. She is 91 yrs old and has had afib for over 25 yrs. She has afibs almost every day, but she was like that on the Tikosyn and digoxin too after a few years. (I do believe these drugs helped her the first few years). Her EP offered an ablation or amiodarone as a treatment for her now, but she turned down both and has decided to do meditation and breathing exercises instead when she has episodes. This seems to work for her and quiets her anxiety when she gets afib episodes.

1 like
Reply

I had Paroxysmal AF for 20 years. Now asymptomatic persistent, heart rate less than 90bpm. I was advised to stop Flecainide as it had ceased to stop AF. I was told this by a cardiologist (not an EP), a specialist arrhythmia GP and my own GP. I stopped about two days after I was first told to stop. Only medication now is an anticoagulent.

1 like
Reply

You may also like...