Good experiences of flecainide?

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Hi

I'm about to come of adizem xl and start flecainide. I've had a calcium scan of my heart which showed no calcification. I have seen a lot of negative posts about flecainide e.g. weight gain, loss of energy, memory deterioration etc. but no 'good news' stories so far. I'm starting to wonder if I should take it at all!

So ... can anyone offer any reassurance that it's an improvement on my current medication?

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10 Replies

  • Posted

    Hi, why are you changing to flecainide? 
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    • Posted

      Recommendation of my cardiologist. The adizem isn't completely controlling my a fib and he said this would be much better. Do you take it and if so would you recommend it?

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  • Posted

    My daughter took it and the cardiologist didn't do the correct tests. He was treating her with a beta blocker for SVT and it was working so he changed it to flecainide. She passed away last year and in the PM they found she had ARVC and she should not have been on flecainide. She was awaiting a stress test which would have picked up this other condition. Are you in the States?

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    • Posted

      I'm so sorry to hear about the entirely avoidable death of your daughter. I cannot imagine how awful that would have been.

      I'm in the UK not the states. I've had tests on my liver function (ok), the amount of calcification in my heart (one tiny speck) and my kidneys (ok). I'm not sure what a stress test is?

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  • Posted

    I'm in Ireland. A stress test is done while you are on a  treadmill and an ECG of your heart records how your heart performs under stress, you run or walk very fast. In the US they seem to follow different criteria when they give flecainide and don't use it unless all other medication doesn't work. Also, they do a stress test shortly after the first dose and seem to do heart MRI.

    If you do take it if you feel unwell it is your right to ask for some different medication. The doctor never once told us there were any side effects with the medication and I gave it to my daughter in good faith. 

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    • Posted

      Hi. I'm originally from just outside Belfast.

      I've not had a stress test but I dance a lot (10+ hours a week minimum) which is pretty aerobic. I have to book an MRI for 2 to 3 days after I start. I'm planning it around days when I'll be working from home so I can call on my son for support if I need it.

      All rather scary! It seems to be a drug of last resort and I'm not sure that I warrent it but the cardiologist seems to think it's my best option.

      Thanks for your advice in this matter. It's much appreciated, especially in the circumstances.

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  • Posted

    I am on a low dose - 75mg 2x a day. It made my daily SVT go away as well as my rare A-fib.

    I went from 50 to 75 when I had an A-Fib break through.  The doc wanted to up to 100 because the pills were easier to get but I got another doc to subscribe 150mg which I cut in 2 and are a lot cheaper.

    The docs seem to forget  there are side effects  so challenge, get 2nd opinions, and don't go quietly into the night.

    I have a constant low grade head ache that is usually barely noticeable and I feel very low energy most of the time.

    This stuff can kill you.  My first dose was in ER with an IV hook up.

    It can space the contractions of the heart chambers

    so it doesn't work.

    They subsequently do EKGs to monitor for that.

    I am  62 years old and aerobically very fit with no other cardiac issues. 

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  • Posted

    I live in the United States and it’s the first medication they wanted to put me on bc it’s safe and effective for afib or atrial tachycardia with NO OTHER heart issues. I opted for an ablation after being terrified of the medication. A year later the ablation did not work. Diltiazem didn’t work. Beta blocker worked, but I was foggy all the time. Now, again I’m being told to try flecainide. I’m still nervous bc it is an anti arrhythmic. There are great stories about it on the internet, but also sad ones. 

    Did you go a head and take flecainide?

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    • Posted

      Hi Lawson101. Yes I did start the Flecainide with a fair degree of trepidation and its been life changing. My A Fib episodes have stopped completely. Previously I was having up to five episodes a week, each lasting several hours. Very rarely I may get a very strong, thumping heart for a little while but at least it's regular. I think so long as you have all the relevant tests to ensure there are absolutely no contraindications it's well worth trying. Let me know how you get on if you decide to proceed.

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  • Posted

    My 17 year old daughter died from Flecainide. The doctor didn't do the right tests, i.e stress test, heart MRI. He was treating her for SVT, which is electrical and she had an undiagnosed structural issue, ARVC. 

    He didn't discuss any side effects with us, nor did he listen to her complaints.

    There are warnings on Flecainide, not to be given to anyone with a structural issue. The stress test or heart MRI would have picked these up.

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