Flecainide long term use for Ectopics , Afib etc

[Bassbob57]

Hello people ,I have been on Flecainide for about 6 yrs now, quite a low dose, 50mg twice a day with 2.25mg of Bisoprolol for my Ectopics, along with occasional bouts of Afib other bangs n thumps which are very intrusive on the quality of my life.

Recently The Cardio sent my doctor a letter after 2 differerent kinds of heart scans, which were both positive,( and my heart is structurally in good shape)saying that he is rather hesitant to let me carry on taking the Flec in the long term unless i get protracted bouts of Afib

Due to Proarrhythmia or Sudden death which i thought was a nice subtle touch?

Problem is without this Drug as i have said my life is destroyed i cant swim walk, even eat they are so bad.

i have tried to come off them last week but couldnt handle the constant ectopics etc and have now gone back on the Flec.

i asked the Doctor to write a letter to my Cardio which he has and ive written him a letter myself asking to see him explaining how i feel.

i live a very healthy life lots of exercise , swimming, Flec , is a real game changer for me.

I think an Ablation is the only way to go now as i am now worried to death about the side effects he mentioned although taking Flec is the only way at the moment i can cope.

I just wish the Cardio could feel what it feels like, he always seems a bit dismissive when i have talked to him about how it affects my life..

I also suffer from Depression and anxiety which doesnt help.

Has anyone else been on Flec long term?

Im at my wits end with this.

Regards,

Rob

[EctopicAnnie]

Hi ,l can understand your worry about side effects especially when so put so starkly.l also suffer from ectopics and have had ongoing dialogue with my cardiologist about medications over the years especially flecanide and betablockers.l have been lucky enough to only require flecanide as a pill in the pocket option and have only had to take it a few times never on a regular basis.My cardiologist has been very pragmatic about its use acknowledging that from his perspective l am a very low risk patient as l have a structurally normal heart therefore he would prefer me not to use a drug that does have a risk attached to it however he accepts that symptom control and quality of life are an issue for a patient not just avoidance of risk.He has told me that being on a betablocker and only taking a very low dose of flec helps to mitigate some of the risks involved.Obviously we are talking statistically here too ,every bodies physiology is different so it’s hard to quantify an individual ‘s risk.My cardiologist has allowed me,once fully informed,to make the decision for myself as to when and how l take my medication.Because l am lucky enough to be able to control my symptoms adequately without resorting to full time flec use this is what l do using it only in extremis but you sound very different in your burden of symptoms to me.l am also very lucky with my cardiologist.Prehaps you could discuss with your cardiologist your symptoms and the risks involved with various medications so that you could make a fully informed choice about what you do going forward.ln the end it is your body and your choice and not theirs to make but you need the proper support and info from them.

[OrdinaryGuy]

Dear Bob, It would easy for me to say try to worry less now after 10+ years of atrial fibrillation events but I do - and in some ways my circumstances are similar to the ones you describe. First of all I think you should follow the advice of your Cardiologist on medication and not the GP. I took Flecainide, along with Apixaban (Anti-Coagulant) and Bisoprolol for a number of years without any side effects or "dire warnings." Similar dosages to you. If you didn't know I believe you can take 150 mg in one go, twice a day, if you have an event. This seems to stop the event more quickly. See the Product Informaiton Leaflet in each box - this spells out dosages. However follow medical advice as we are all different in our A/F issues. I would recommend going for the catheter ablation procedure as soon as you can. I had two around 12 months apart and my A/F events have now stopped for over 18 months. I also found I could exercise during my years of A/F without any problems - so try to keep up your exercise activities. I was told by my Cardiologist that the catheter ablation procedure, if successful as it is in the majority of cases I believe, replaces the Flecainside - but you would have to check this. Hope you find ways to overcome and improve your A/F situation. Best wishes.

[Mythos95]

I suffered from A/F for years taking Flecainide (100mg x 2) and Bisoprolol as prescribed to try and correct it. Last year (after about 8 years) I was fitted with a pacemaker and the Flec was reduced to 50mg x 2 and the Bisoprolol discontinued altogether. Seems to work for me, most of the time (I cycle 20 miles a day) but I find the pacemaker uncomfortable and have still experienced A/F although only twice in the last 14 months.