Thank you to those who replied to my post about urine colour on Flecainide... go for blood test this morning, will keep you posted. Can I just ask, did it work for you in keeping the AF away or at least not as many attacks. This is one of the worst parts for me, not knowing when its going to set off. I am quite symptomatic, dizzy, faint, breathless when in AF, lasting between 20 and 36 hours and then taking a few days to get over it. Thanks again.
Pat
Good luck with your blood test, Pat.
I found flecainide worked well, although it's a powerful drug and can do things you'd rather it didn't do. It doesn't suit everyone. For me, it kept AF away totally for a year, but it did creep back and eventually I took a higher dose - 300mgs (150 x2) a day for a while latterly. I was able to give it up after a second ablation, but I still get AF occasionally and 50mgs of flecainide usually sorts it nicely. I don't leave home without it because, as you say, you never know when AF might crop up.
Hi,
Just reiterating what Rellim has said basically...The Flecainide worked for the first 12 months but by the time I had my Ablation ( 12 months later) I was passing out not able to walk even a few steps, chest pain and breathlessness. It wasn't that the Flec had stopped worked it was more a case of my PAF had got progressively worse over a 12 month period...
I am not on any medication now apart from pain relief for another condition.
Carol.
Sounds so good
Have you tried magnesium like CALM? I take small doses throughout the day with water. And it has worked well .
Best wishes with the blood test Pat. I've been taking Flecainide for almost 2 years and in that time I've had no AF at all and the relief is enormous - like you, I dreaded the next episode. I was prescribed 2 x 100mg daily and am currently reducing that dose very, very slowly - with my EP's approval - to try to get to the lowest optimum dose.
Hi Finvola, I have also been taking Flecainide 2x100mg daily for 2 years with no AF and planning to start reducing it a bit. Can I ask what is 'reducing very, very slowly' and how long have you been on the reduced dose?
Hi Orchardworker - I use a pill cutter to produce a 75mg dose which I have been taking at night - 100mg as usual in the morning. I've been doing that for 4 weeks without problems. In a week or so I'll then reduce the morning dose to 75mg and leave it like that for a couple of months before trying to go down to 75/50.
My long term plan is to reach 50/50mg (if possible) but not in large leaps - which I tried before and although I didn't have AF, I could hardly function because of long bouts of PVC's.
It's still very early days but I'll post anything of interest regarding reduction after I've seen my EP next week.
Great info thank you Finvola and well done on reaching what I believe is the important 4 week stage.
When I get started on my reduction now being postponed (due to Mg and CoQ10 test levels not at the top of the normal range) until August (when I will have been on Flec for 29 months), I wanted to do 75 in the morning rather than the evening as the latter has been more prone to AF but my cardio said he doesn't like uneven doses - not sure what experience he has got of such small dose variances though. Also, I would be inclined to go min 3 months if not 6 months at the 150gms level unless convinced otherwise by the medics/others here.
Good luck with the EP and look forward to another post.
Thank you Finvola, that's so encouraging😊
It worked well for me as PIP for about 6 years - then I took a daily dose - 150 mg X 2 day which is the highest daily dose with mixed results mostly good. Ablations were the solution for me. AF tends to be progressive so drugs will moderate AF but sometimes they stop be effective and that's what happened to me.
Do get regular blood test for liver and kidney function - at least 3-6 months, Flecainide is a toxic drug.
Whoa - can you say more about this? I got a liver function test recently (on advice of my cardio). I was just out of the recommended range, but he was concerned because it was not high enough to worry about. He asked me to do another test in a few months.
Different drugs affect people differently as there may be other things going on therefore it's a bit like alcohol, there may be side effects one of which could (not would) affect your liver and kidney functions therefor the blood tests to ensure they are not having a detrimental effect. I take a lot of toxic drugs for another condition so have regular blood tests - every 4-5 weeks but when I was taking Flecainide I think I had bloods every 5-6 months.
It's good your cardiologist is having you re-tested in a few months but just make sure your GP keeps on top of it on a regular basis.
How many ablation so did you have and do you ever get any episodes anymore since?
I had 2 - the first made me a lot worse - probably my fault as I felt SO fantastic after years of feeling crap I overdid things. The 2nd was performed about 12 weeks after and that was Mar 2014 and not one AF episode that I am aware of. I have had a few episodes of multiple ectopics and tachycardia but I take immune suppressants which are known to cause arrythmias so they are the most likely suspect.
Ablation is an invasive procedure but for me the benefits way outweighed the risks and I am very pleased with the result.
I've been on Flecainide for 5 years and only had one episode since starting it. That was while I had a nasty flu type virus so think may have been partly dehydration. Fine since though occasionally get overwhelming fatigue for about 20 mins. I can put up with that.
Best wishes Wendy B
When I was on Flecainide it did a good job of keeping me in NSR but after very many years it turned on me by giving me some form of heart block. I have been able to resume it on a much lower dose with a cocktail of other meds but unfortunately that lower dose doesn't do much for my AF now and it has been replaced with Amiodarone. Take care. Anne
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