PAF - move to PiP only

[AAJJTt]

Hi

Can anyone tell me of their experiences of moving from daily medication (Flecainide) to PiP only?

Heart attack in 2019, out of the blue - fit & healthy. Investigations - no real culprit - eventually a few months later, after symptoms & further investigations, diagnosed with paroxysmal AFib. Basically the thought is undiagnosed and untreated AF may have caused small transient clot that went into my heart. Diagnosis - primary PAF with secondary NSTEMI Type II. Heart ok, no structural problems.

Since starting my medication (daily flecainide am & pm) I have been stable. Excluding one episode in 2020, I have now been 'AFib Free' for over 3 years with no discernible episodes (detected myself or with a Kardiamobile). Prior to my treatment, my episodes were quite distinct. I never felt particularly unwell but I had high HR with RVR and the 'tell tale' flutterings in my chest. All episodes auto-synced into NSR in about 4 hours.

I try to follow a health lifestyle and I am able to maintain a high degree of fitness (running, climbing and cycling). As the years have gone, my medication has been reduced, removal of beta-blocker and anti-coagulant (still on Clopidogrel, which is up for discussion soon). Currently, along with my daily flecainide, I also have the option of 'emergency PiP' too - extra does of flecanide plus beta blocker but thankfully I have never had to use this.

On my next review in Sept, the removal of the flecainide and anti-platelet is up for discussion and a move to PiP only. The criteria was, still remaining episode free and maintaining high fitness, both of which I have achieved to date.

I must admit, I am kind of happy with the status-quo; I lead my life with no limitations. I am not anti-medication, it has been fine for me with no side effects but I like the idea of reducing it. That said, I like the idea of being 'Afib free' too and maintaining my current position. I am wary about coming off the daily medication and whether or not that will take me down a path. Part of me, likes to believe, I might be one of the lucky ones but ........Hmmmm

Thanks

[jeanjeannie50]

Sorry you haven't had any answers to your question. Most people start the other way around with pill-in-pocket and then go on to taking Flecainide daily. I'm sure that I have read some posts on here that have done what you are wondering whether to do. Sometimes after one person responding to a post, others follow.

Jean

[AAJJTt in reply to jeanjeannie50]

Thanks for the reply

[irene75359]

After two particularly unpleasant and symptomatic episodes of AF seven years ago, I was seen by a cardiologist who prescribed 100mg flecainide daily. After a few months, and only having perhaps one episode in that time, I spoke to my GP about using flecainide as a PiP. He was totally supportive and I stopped the flecainide and bisoprolol and used both as and when I needed it. My AF hasn't progressed at all, in fact last year I only had one episode, and 200mg (100mg takes too long) stops it in 1-2hours.

The only point I would make is that AF caused a small clot which had very serious repercussions for you, thankfully you have suffered no lasting effects. I would be questioning stopping the anticoagulants give your history. I know that the rare episodes I have now aren't as symptomatic as the first two but I may be having more whilst I am asleep. I just wouldn't take the chance.

Pleased that you are here and heathy!

[AAJJTt in reply to irene75359]

Thanks for the reply. I am pleased to hear that your AF has not progressed.

I understand your point about the anticoagulant, we did discuss this. I don't actually meet the threshold for anti coagulation but it was initially prescribed as precaution on my AF diagnosis. I was generally ok with Edoxaban bar a few more bruises while climbing but there were a couple of small bleed events too; trace amount of blood detected in other tests. All were investigated, thankfully nothing serious, the conclusion being the anticoagulant had just exacerbated the blood detection. All the above was considered and the decision was made to stop taking it, on the condition that if I had to use the 'emergency PiP' then I should resume the anticoagulant and revert back to the clinic for discussion again.

I will see how the next few months go, hopefully AF free, until my review. I take you point on asymptomatic events as well, after all, I wasn't aware of it in the first place. That said, since my MI, I am now ultra-sensitive to my heart and it's cycles. Combine this with the use of tech (KardiaM), I will take the chance that I can detect changes. I'm confident I can to that and make an informed decision. Also, if I feel i need to take the PiP or anticoagulant then I will have no hesitation.

Thanks for your comments and advice. I will see what the Cardiologist says in a few months.

[Speed]

The lack of replies and your request of similar experiences may be an indication that very few people are able to reduce their meds to nothing without surgical intervention or that those who have are no longer active on this site?

It is certainly not something I’ve seen before though kwould love to be able to consider it myself. Personally having had a TIA, I’ve been told I’m on Clopidagrol OR Apixaban for life. Should through ablation, I be none symptomatic of AF, then I would be switched from Apixaban to Clopidogrol.

[AAJJTt in reply to Speed]

Yes, it certainly looks like this direction is not common, the use of the dual therapy (noac & clop) too except in cases like mine: non-val AF & ACS.

Thanks for your reply.