I had an ablation four years ago that stopped my AF episodes. Over the last year or so the attacks have returned to the point that they are now pretty much every 24 hours.
I have a supply of the Flecainide PIP that I was prescribed four years ago.
I have been using my old stock as PIP usually one dose of two does the trick.
I strongly suspect the official answer is not to use my old stock and put up with the attacks but I feel taking the PIP is by far the lesser of two evils.
The old stock is still in date.
I wonder what people think or better still know?
I have booked a private cardiologist appointment (having to wait 7 weeks) and hope he will prescribe PIP or a daily dosage properly.
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ThinLizzy1
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Hi - this is something that you need to talk to your cardiologist about and I feel your frustration at having to wait. This is a difficult question for us to answer but these are my thoughts and reactions to your post, from a none medical view.
My understanding is that if your medication is within the ‘use by’ date on the box then there will be nothing against taking the medication, my concern would be that you are, it seems, to be taking it daily and from what you say ‘one or two’ tablets to do the trick? Taking such a toxic drug without medical direction or supervision from an old script is not ideal at best inolve risk at worst. Do you self-monitor and take your own ECG’s? If not how can you be sure that you have AF? It is very difficult to distinguish one arrythmia from another from body sensations.
I am surprised that you have a stock of Flecainide as when I was prescribed Flec as a PIP I was unable to access more than 5-9 tablets at a time until I was prescribed a daily dose, at which point I was quite carefully monitored - but that was some 10 years ago.
Have you clear directions of how to take Flecainide and the limit of the amount you may safely take? The maximum daily dose is usually limited to 100mg x 2 daily with a total of 300mg maximum in any 24 hour period. Are your tablets 50mg tablets or 100mg tablets?
May I suggest that if you are unable to speak with your cardiologist for some week that you consult either your GP and if that proves fruitless, a qualified Pharmacist for their advice as soon as possible or ring 111 for advice.
This needs specialist input so on the grounds of better safe than sorry, I would encourage you to not use the tablets until you have such advice.
I am as sure as I ever could be I’m having attacks due to my pulse being erratic combined with the heart working less efficiently (I’m on thinners for life), I’ve had in excess of 100 episodes between my previous problems and the recent return.
I never exceed the daily dose that was explained to me at the time they were prescribed.
It just feels like the safer of the two paths and certainly the less stressful and anxious.
I understand the caution you talk of and know that would be the wisest/official line but I am stuck in a position of having to go seven weeks with probably more hours with the attacks happening than not.
My caution is that although you say you are ‘as sure as I can be’ until AF is confirmed on an ECG you cannot be certain and that would be a major concern for me.
Take very good care and hope you find some resolution.
Many years ago because Flecainide had been prescribed for me before, my GP was able to prescribe them again. Yours may be able to do that for you.
You may be aware that these pills can at times cause more problems than they cure, some are serious. After using them for many years Flecainide started causing me rhythm problems, before that was discovered I was singing it's praises and thinking walking up hills slowly was AF and age related, but now that I've stopped taking them I have so much more energy and I can walk fast again.
As they are still in date I don't blame you for starting to re-take Flecainide again, but I would certainly have a chat with your GP. Having said that I know that all GP's are not helpful and sometimes hard to assess. I'm lucky, I ring my surgery at 8am and then the GP calls me back within hours, after a chat he or she will decide if they need to see me, or sometimes they can just prescribe medication.
Sorry to hear that your heart rhythm is causing problems again.
On my ECG, that made my cardiologist take me off of Bisoprolol, it stated:
Atrial flutter with variable AV block with premature ventricular or aberrantly conducted complexes. Left axis deviation. Low voltage QRS. Abnormal ECG.
I thought I felt ok and that feeling weary when walking up hills was all part of AF, but since coming off Flec I feel so much more lively and can actually walk fast again without feeling breathless.
If they're still in date and you're acting on PiP advice you were given post ablation, in your position I think I'd take the PiP incrementally. Perhaps have a chat wuth your GP about it so theyre aware.
Hope all goes well for you. It's reminded me to talk to my Arrythmia Nurse about PiP going forward should I need it. My AF is currently in abeyance. It's so nice, and I hope yours stabilises again.
I don’t know where you live, but if this were me I would have access to advice from an arrhythmia nurse (lucky enough to have one, even if she takes a few days to get back to me sometimes) and my GP practice has an ECG machine. Even if it took sharp elbows or a visit to their reception I would want some early diagnosis of whether it is AF or something else going on, and reassurance about the best medication. I’m sorry you have to wait weeks even for a private appointment. Good luck with this new challenge
when my AF returned 5 years post ablation my EP insisted on me having an echocardiogram before commencing with flec as a pip. Probably just a precaution. If your private appointment is scheduled with a cardiologist you’ve seen before, maybe try emailing the question saying you need advice as to what to do for the 7 weeks whilst waiting for the appointment.
hope you get an understanding of what’s going on soon and get it sorted ASAP - surprised you’re having to wait 7 weeks for a private appt - do you want to see a specific cardiologist? When I made a private appt it was a few days only - still the best thing I ever did as at the time I was struggling to get an understanding of it all and getting proper diagnosis so I bought a Kardia (£150) and went armed with masses of evidence which the cardiologist welcomes and looked at it all - I came out with a diagnosis, a plan for treatment, added to waiting list for ablation (NHS) and a bloody HUGE smile on my face
HiLooking at your posts you say your ablation 4 years ago was for Aflutter. Or did you have Afib too and a sort of 2 in 1 ablation for both rhythm problems ?
Sorry it's come back but 5 years is a nice rest! I fully expect mine to come back as this seems to be the norm after an RF ablation but just hope it isn't too soon!
possibly you can make a call to find out about your question. None of us can tell you, but you may need more than once in a while. You also might need something different. As you most likely know, there is no cure for a fib, then everything they do is a temporary fix and works until it doesn’t. I now have a pacemaker, but prior to that the longest anything worked was one year so you were lucky. The other was six months and a third made me worse. My first cardioversion lasted 3 1/2 weeks wonderful 3 1/2 weeks though. The second one did not work at all. Thus the pacemaker. My doctor does not believe in repeating things that fail the first two ablations were with another doctor in another state and the third I can’t even talk about the doctor. He makes me sick.
Because you have that much time to wait I would definitely ask the doctor you will be going to see about taking them or not. He may not be able to answer for me tell you don’t do it if you feel better when you take them it might be OK, but as you can see, I wouldn’t tell you what to do. I don’t think anyone on here would.
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