New Fleconaide User

[Finlaysmum]

My cardiologist prescribed fleconaide for persistent ectopics along with magnesium. I’m on day 4 and I’m not sure if it is really making any difference apart from making me feel slightly weird. I’m starting on a small dose to build up. Any advice as to how long it takes to get into your system and make any difference. The ectopics are hard to live with without anything assisting them! I’m not on beta blockers just this.

[stoneyrosed]

Hi, Flecanaide usually takes about 4-6 weeks for your system to get used to. It is well worth persisting with as it is probably one of, if not the best drug to take for AF. However it doesn’t agree with everyone, if your still struggling after a month or so your GP or Cardiac nurse will prescribe another drug for you. I am sure you will find in a few weeks you will feel much better. Good luck !

[Finlaysmum in reply to stoneyrosed]

Thank you that really helps. I’m still at the stage when I get alarmed when I have a bad day with them. The first couple of days it did help but today was a no no. Guess it’s the same for many - good day and bad day.

[stoneyrosed in reply to Finlaysmum]

There are people on this forum a lot more clued up than I, but at a guess, I would say the flecanaide helps the heart find a natural sustained rhythm but it can take a few weeks for this to happen. I too took flecanaide and struggled with one or two symptoms at first but it gradually improved after a few weeks.

[Finlaysmum in reply to stoneyrosed]

that’s encouraging- I was given it solely for the ectopics.

[secondtry]

It took my body 3 months to adjust to 200mgs Flecainide as 100mgs did not stop the AF. Separately I consulted a Naturopath in London who said he just prescribed his AF patients a magnesium compound and CoQ10, so I doubled down and took that as well; recently those supplements have been reduced. Over 8 yrs now down the track, no AF issues, average of one ectopic a day and great energy.

PS done a lot of homework and made a lot of lifestyle changes as well!

[Finlaysmum in reply to secondtry]

Thank you for that encouragement I am glad to hear things are under control for you. It’s hard to stay positive at times when the afternoon especially with me can be quite debilitating- for some reason the extra beats start then. And like I’m sure a lot of people feel - it’s hard to live with at times. I have altered things and don’t have caffeine or alcohol trying GF free too. I’ve been on magnesium for 2 weeks now too.

[secondtry in reply to Finlaysmum]

Keep making those changes and learning, I have gone from borderline depression unable to do even short walks to very good quality of life just through perseverance.

[Finlaysmum in reply to secondtry]

That is really helpful - thank you. Have a lovely Sunday

[Qualipop in reply to secondtry]

Which magnesium do you take? I've been having constant ectopics, 5000 within 8 hours but not AF. I'd like to try it but am not sure which brand to go for or how much to take.

[secondtry in reply to Qualipop]

nutriadvanced.co.uk/megamag... or if your stomach finds it too troublesome use ancient-minerals.com/produc...

I checked with my GP & cardiologist first just in case, raised eyebrows are likely. I then started with the recommended dose but over the years have reduced it as I monitor the effects and my QOL improved eg recently reduced to Nutri only & one quarter dose once a day as found I was waking up too much in the night.

I am afraid you have to experiment to see what's best for your individual circumstances, lots of trial and error but it was worth persevering for me.

[Qualipop in reply to secondtry]

Thank you very much. Very helpful. I do have stomach problems with a lot of things . Will check with GP first. I don't take anything without clearing it with them because I am on strong opiates.

[Finlaysmum in reply to Qualipop]

Sorry to hear that. It’s pretty awful at times isn’t it. I use a magnesium spray as I think it’s gentler on the stomach and I get it from Amazon. Hope it helps

[Qualipop in reply to Finlaysmum]

Thanks. The ectopics started 5 weeks or so ago and were constant, around every 3rd beat. 2 weeks ago they started to reduce and have no stopped completely b ut GP says they are likely to come back. I could barely feel them unless I took my pulse but I felt faint and dizzy.

[Finlaysmum in reply to Qualipop]

I’ve had them every day since August. And I feel most of them - worse in the afternoon. I hope yours continue to diminish

[Qualipop in reply to Finlaysmum]

They've stopped completely now. I had them 24/7 for about 4 weeks; reduced the next week ( except for mornings) then just vanished. Weird. The hospital said they'd had a lot of people with heart reactions after their booster but my G P insisted it wasn't. I'd had very occasional stress induced ventricular ectopics for y ears; maybe half a dozen strong ones a week ( Like I'd been kicked by a horse) but these were both PACs and PVCs absolutely non stop. My holter monitor fell off after 8 hours but still showed 3000 PACs and 2000 PVCs in that period. That's 625 an hour or one every minute.

[Finlaysmum in reply to Qualipop]

I’m really glad to hear they have stopped - I live in Hope

[Qualipop in reply to Finlaysmum]

I hope yours stop ; they are horrible. My GP said they don't usually medicate for ectopics if they aren't making you dizzy or faint and that hey do no harm unless they change to AF. I Just can't believe that such an erratic heart beat every single minute can be harmless.

[Finlaysmum in reply to Qualipop]

I totally agree. Unfortunately in the days we are living there is an element you have to make your own arrangements! They were stopping me from doing anything so I asked for a referral on the NHS but also saw a cardiologist separately. Or I would still be trying to get a GP to see me. Have yours stopped now?

[Qualipop in reply to Finlaysmum]

Yes, stopped completely. No problem here seeing a GP though. I've had 1 phone call to GP who contacted a cardiologist for advice, one to pharmacist at the surgery and 3 face to face appointments within 3 weeks plus the holter monitor from the hospital. ( Results were back in a week) The only problem has been seeing a different doctor each time although the first one i saw has sorted that now and i have to see him or one other

[Gowers in reply to secondtry]

really interesting to hear how you have not only reuced ectopic but also no AF. I must take a look at those supplements. I have had 4 ablations so af free at the moment & only taking blood thinner & statin. Still get ectopic now & then

[MikeThePike]

Hi there, I noticed that some other commenters keep mentioning Flecainide with reference to AF but you did not mention AF. So I'm asking have you been diagnosed with AF at all? From your comments you seem to have only PVCs. Is that right?

[Finlaysmum in reply to MikeThePike]

Hi - yes that is what the Cardio said.

[Finlaysmum in reply to MikeThePike]

I am also waiting for heart MRI to confirm

[Qualipop in reply to Finlaysmum]

I started having only PVCs about 20 years ago. At first they were quite bad but over a couple of years they settled down to only 3 or 4 a week then they stopped completely for about 10 years until this episode recently which was both PVCs and PACs and much much worse. It took a long time to diagnose the original ones because they weren't constant. ECGs and a monitor didn't pick them up. It was only AFTER a stress test that they caught them. I'd sat down to recover but they'd left the electrodes attached and while resting I had a long run of them so they could see where they were coming from. I was told they we re harmless and to ignore them which I did- eventually. With this recent bout hey weren't the same. I didn't feel a thing. I just felt a bit breathless and sometimes faint so I started taking my BP 3 times a day. Both BP and pulse were normal. It was a week or two later that I actually noticed the symbol for erratic beats on my BP machine had shown up every single time for a week so I contacted my GP. I hadn't taken my BP before that for ages so I can't say exactly when they started. IT could be a complete coincidence that I'd had my booster just 2 weeks before .

[DebbiB28]

Morning. I'm in a very similar situation. I have recently been prescribed 50mg once a day flecainide for my ectopics. Many people learn to live with them but unfortunately they were ruining my life. I've been on the flecainide now for about 3 weeks. I have noticed weakness/shaking in my hands and legs particularly around the knees. I also get dizzy particularly when standing and perhaps a few more headaches. However, this is much better than the ectopics which have certainly improved. They're not entirely gone and seem to return in evening/early morning which makes sense as this would be probably when the tablet is wearing off. I'm hopeful that the relief will continue and that the side effects will drift off. For me the main thing is that the tablets continue to help, I'd say keep going and give them a chance! p.s. I also take the magnesium but can't comment on effectiveness of that. Best wishes. Let us know how you get on.

[Finlaysmum in reply to DebbiB28]

Thanks for replying - and yes I totally relate to all that. I really hope it helps for you. It’s weird how it is as certain times of the day isn’t it. I will carry on with the flec - as like you the amount of ectopics were not allowing me to live normally and I’ve had to cancel so much. And staying positive at times has been hard. But onwards and upwards as they say. Hope yours keep improving.

[Singwell]

Yes, I recall feeling weird on and off for about 10 days. But it helped my energy levels so I stuck with it. My issue was AF not ectopics. Give it a couple of weeks abd see how you go. Drink plenty of water whilst you're getting used to it and any new medication

[Finlaysmum in reply to Singwell]

thanks for the advice - I have large bottle of water in hand 😅

[Afibflipper]

I have been on Flecainide since April, in the beginning I actually stopped it as I felt dizzy, almost couldn’t see straight (like I had someone else’s glasses on) so I stopped it - two days later AF back with vengeance. Went straight back on it, although it probably took about 2 months to tolerate it actually converted my AFib into an AFlutter. The latter is usually easier to treat with the ablations which I had last week. Looks like the flutter so far has gone but I have to stay on Flec because if I stop it I will get AFib back. So depending on how bad you feel you may need a while to tolerate it (I tried to keep my doses as near to 12 hourly as possible together with my anticoagulant)

[Tarikor]

Flecainide was a lifesaver for me. I still use it as a pill in pocket approach for when I get the odd ectopic string here and there.

It does have side effects, but overall, I would say it is an effective drug and a lot better than using verapamil for example (which eventually caused me to have acid reflux which has never left me since.. sigh)

[greg35]

I also have just ectopics and it ruined my life I was taking 20,000 extra beats a day could barely walk, I have been on Flecanide and also Nebivolol every day day for 3 years was a life saver for me, the 2 ablations I had 4 years ago did nothing, try the meds for a couple of months to see if it will work for you, I hate taking meds but I couldn't go on, fingers crossed for you.

[Finlaysmum in reply to greg35]

That’s really helpful- thank you for replying. And yes totally can relate to how debilitating it can be. There have been some days I could do very little. The side effects aren’t great but I don’t think I have a choice. I am glad it is keeping them in check for you.

[greg35 in reply to Finlaysmum]

So far so good still don't exercise much but glad to be back to work and out for walks, my grandchildren keep me busy! Hope things settle with you also, message me any time you want it always helps, I don't have AF but find this site has helped me enormously? Good luck Ingrid

[Finlaysmum in reply to greg35]

thank you

[MikeThePike in reply to greg35]

Hi greg35, I'm interested to know why the 2 ablations did not help. Did they not stop the ectopics at all or did they come back again?

[greg35 in reply to MikeThePike]

Hi unfortunately they did not stop the ectopics at all the EP said they were coming from the moderater band and it was too risky to try for another ablation as I had RBBB damage with the last ablation he said had it been the left side I would have had heart failure! Scary

[MikeThePike in reply to greg35]

Hi greg35, i'm sorry to hear that.I understand that there are some pvc sites which may make successful ablation unlikely. I also understand that RF and Cryo ablations are very risky. I would not have either because they cause scarring and inflammation. Ablation technology will continue to improve so hopefully these complications won't occur in future.