Flecainide - from PIP to 2x100/day now want to get off of it

[Norbu]

Hi everyone,

My first post on here. I'm reaching out because I've had some issues with Flecainide that my doctors don't acknowledge and I know I'm not crazy. I've had PAF for 30 years. Would have an event maybe once a year or slightly more. Then I gained weight and got severe obstructive sleep apnea which would trigger me, at its worst, every few days...I didn't realize that's what was happening I just thought my PAF suddenly just got outta control. Flecainide 100mg always worked as PIP to convert me so I started talking it on my own once a day for a week to get some sleep finally. I thought I could just stop but when I did I immediately started getting PVCs for the first time in my life! They were prolonged and would trigger afib. I am super sensitive to my heart rhythm since I've had PAF for so long and I know I never had PVCs like this before stopping Flecainide cold. I went to a cardiologist (after not having been seen for 10 years since I was without health insurance) who told me to take 100 mg twice every day along with a tiny dose of metoprolol. The PVCs have gone and my nightly afib too (I got the apnea treated with a CPAP machine). Now that my primary trigger for afib is gone I want to stop taking Flecainide and go back to just PIP usage for what will hopefully be rare afib again but I'm worried about getting those awful PVCs again! Any advice? The cardio i went to see just told me I could stop cold turkey for both Flecainide and the metoprolol but I know that is bad. Just for background I went into SVT the first time in my late teens and had WPW which was ablated by the creator of the procedure Dr Jackman when it was still only experimental. He cured my WPW but left me with PAF. A modern ablation might fix me up for the afib now but in the meantime I'm trying to deal with these powerful meds. Thanks so much in advance. 🙏

[Rubymurray25]

Hi Welcome to this amazing site, There is a slight parallel between our stories in as much as I had my first ablation 3 months ago and they stopped my regular Sotalol to 2 x 100mg Flecainide a day. After a few days I was back in hospital with a full blown 3 day AF episode, but the Cardiologist said that wasn't unusual and haven't had anything for the past 10 weeks. I used Flecainide as a PIP prior to the ablation and had a success rate of about 75%. My Cardiologist wants me to go cold turkey on the Flecainide at the end of August, 3 months on, a little apprehensive, but you would like to think they know what they are doing. I also have severe sleep apnea ( 68 per min ) but 12 months on I am down to 2.5 after 8 hours sleep, so I'm really happy. I know are all so very different and always should seek the advice from a professional, but I thought I would share my story and welcome you and wish you good luck in finding what is right for you. I have said this many times before but I honestly don't think without this site I would have known I had sleep apnea!!

[Norbu in reply to Rubymurray25]

Thanks so much for your thoughtful reply. I wish you great luck as well and please give an update after you get off the Flecainide. I just discovered this site tonight and it seems like a godsend for sure. Thanks again.

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Hi Norbu and welcome to the forum. I’m guessing you are from the USA and things might be different over there but taking Flecainide as a daily maintenance dose is very different to taking it occasionally as a PiP. We are not medically trained, but Flecainide is a very potent drug and any changes to dose really must be done under medical supervision with your Doctor. The first issue is that if Flecainide is taken on a daily basis, it should taken in conjunction with either a betablocker or calcium channel blocker otherwise it could trigger Atrial Flutter. This isn’t the case if taken as a PiP. When I was told to stop taking Flecainide as a daily maintenance dose, I was advised that there was no need to be weaned off as is the the case with betablockers so I just stopped and it wasn’t a problem......