Flecainide trial and update

[DebbiB28]

Just a follow up for those who were interested in flecainide. I initially tried this as a PIP for ectopics that although not considered a significant 'burden', had an awful impact on my life. The PIP approach was very effective for me and so decided to go for the 'dailly' route. I had an ECG on day one and then a follow up on day 5. I was prescribed one tablet a day (50mg) and so took this in the morning alongside 1.25 mg bisoprolol.

I am pleased to say that the flecainide has made a big difference - ectopics not completely gone but certainly improved. They seem to rear their head again late evening and first thing in the morning - possibly when tablet has worn off - it does seem that most people seem to take 2 tablets a day.

In any event, so far so good. I would certainly urge anyone who found themselves in my position and had this offered to give it a go. However, I think I do have some side effects which I hope may disappear with time - tiredness, weakness in arms and legs.

I do have a couple of questions myself if anyone can help?

Is anyone in a similar position to myself and could share their experience?

Why do I see that flecainide is often referred to as a 'toxic' drug?

Is this effective in the long term for anyone?

Is it ok to have a glass of fizz with Christmas dinner?!

Thanks for your help, hope this may help others like me!

[Ajpenk64]

Hi Debbie

I was put on Flecanide 2 tablets a day seemed to work at first but had to increase to 4 tablets and they seemed to work although could still feeling the sensation/feeling of an Eptopic without it actually receiving the extra beats I found it affected my vision trouble with distance focusing and started to make me dizzy and generally not well anyway I decided to revert make to Biosopral and sertraline which deals with anxiety all this causes and so far it seems a better option eyesight returned to normal not dizzy and feel overall healthier I must admit Eptopics are worse but I’m just trying to work out what option is the best finally I’m thinking of having the ablation as I want to get rid of drug taking

Best wishes

Andy

[wilsond in reply to Ajpenk64]

If you get offered an ablation seriously consider it. I managed for years on meds but then quite suddenly stopped being effective.Ablation for afib and flutter June 1st,and NSR since( touch wood!)

[DebbiB28 in reply to Ajpenk64]

Thanks for responding. It really isn't easy making decisions on medication and we all have to assess whats best for us. I understand the feeling of an ectopic without it being full blown. I think all drugs come with side effects but right now the freedom I am experiencing from the ectopics is outweighing the side effects. Have you been offered an ablation - so far this hasn't come up for me. Thanks again and I wish you all the best.

[Siame in reply to Ajpenk64]

Hi Andy, I thought the ablation would Iead to not taking medication. But my cardiologist still recommended bisoprolol and rivaroxaban as a protective/preventative measure. Ablation does necessarily mean drug free

[Gill68]

Hi, glad to hear you’re getting some improvements with Flec. I’m in 100 mg twice a day, I def need the two doses. I still arrhythmia when I walk up an incline, or more than 2 flights of stairs. I’ve been in it for 10 years and can’t imagine life without it, so hope I continue to tolerate it. I drink one glass of red wine almost ever evening (any more would give me hangover like symptoms which I sometimes wonder might be due to the medication’s effect on the liver, which I’d rather not know about) so fear nor about your Christmas fizz!

Gill

[DebbiB28 in reply to Gill68]

Thank you for responding. Sharing experiences finds it all less lonely! I will certainly enjoy my glass of fizz, it's been quite a while!! Best wishes.

[dmack4646]

was on it for 15 years and it worked very well - till it didn’t - I could not tolerate higher doses otherwise would probably still work - you are on a low dose so that sounds good. I would describe it as a powerful drug rather than toxic and you must never take more than 300mg per day..but it gave me 15 years respite…

[DebbiB28 in reply to dmack4646]

Thanks for replying. It does seem that many people are on this for a long time. I hope you have found an alternative way forward.

[dmack4646 in reply to DebbiB28]

I am on Droneadrone not as good but keeps under control

[DebbiB28 in reply to dmack4646]

Not heard of that one! I guess any form of 'control' is a help. Best wishes.

[wilsond]

Worked well for me ,both as PIP and daily dose for several years.No issues.

Eventually my AFib and Flutter got the upper hand and my EP offered ablation for both on June 1st.

NSR since.

[DebbiB28 in reply to wilsond]

Thanks for your help. Fingers crossed your freedom continues!

[wilsond in reply to DebbiB28]

You are welcome xxx

[MikeThePike]

The problem with drugs like flecainide and bisoprolol is that they were not designed to treat ectopics. Many people say that they no longer feel the ectopics but I bet that they are still happening. What we need are drugs that specifically target the ectopics while leaving the rest of the heart alone.

[DebbiB28 in reply to MikeThePike]

100% agree. Although I'm over the moon to have some freedom from them, they are still there. I don't feel as many but at certain times they let their presence known! It's also difficult when no-one can tell you WHY you are getting them in the first place. Yes there are assumptions but I'm always asking myself what more can I do to help myself.

[Siame]

Hi, I have been taking Fleicanide 50mg (long acting) for well over a year, I also take 2.5mg Bisoprolol and Rivaroxaban. I may have had some symptoms when I first started, but tbh I'm not sure. I still get very short runs of ectopic, also had two minor further episodes of AF that lasted about 24- 36 hours and responded to taking extra Fleicanide as a PIP. Fleicanide maybe toxic but most drugs are. In the past I've had cardioversion and also an ablation. I'm hoping my medication avoids a further ablation. I have a friend who has taken 200mg of Fleicanide for many years for an arrhythmia condition, no side effects so far.

Happy to talk further

[DebbiB28 in reply to Siame]

Thank you. This is really reassuring. I am definitely feeling more confident with taking it and am hoping that any possible side effects from the drug will pass. At the moment most obvious is weakness in legs and arms. Overall though although I too get ectopics creeping in, there is a definite improvement! It's really helped to share experiences with others when you think it's just you! Thanks again.

[Siame]

Hi Debbie just to add that I do drink alcohol in moderation. Maybe two or three glasses of fizz and equal glasses of water

[DebbiB28]

Thanks for the insight into alcohol - I've tried being alcohol free for almost a year and still got ectopics, some very bad, so I don't feel alcohol a factor for me. I am certainly looking forward to raising a glass and will take the tip of adding extra water! Cheers!