Flecainide as PIP

[MaryR]

After being diagnosed with AF 18 months ago then stopping Flecainide altogether 8 months ago (remaining on Bisoprolol), I had a episode of AF. After 3 hours i decided to 'bite the bullet' and try Flecainide as Pill in the Pocket for the first time. As instructed by my EP I took two and sat down for a while. After an hour I realised I was back in sinus rhythm. As a result I now feel more confident that this does actually work for me and I am not so fearful of future episodes of AF. I'd be interested to hear if other AFers have found PIP to be so effective. Merry Christmas everyone

[BobD Volunteer]

Back when I had it many years ago it worked for me most times but in the end I had three ablations and knocked it on the head. Merry Christmas to you also. None of this stupid Festive Holiday!

Bob

[bluebell111 in reply to BobD]

Well said Bob it is Christmas as in Christian ! ......Thank you for all your wise & occasional witty comments this year....some humour helps when we are feeling stressed. Have a good CHRISTMAS.

[cbsrbpm in reply to BobD]

Getting on to a different subject now but I was so furious with College Director this year who sent out the usual thank you for all our hard work (where is the money) email wishing us all a happy festive season, WHAT! We as a University celebrate all religious an non religious occasions i.e. Chinese New Year, Diwali etc, etc and we all join in and have great fun, never has anyone been offended. Why, oh why, can people in this Christian country not be wished Happy Christmas. So here goes everyone, HAPPY AND AF FREE CHRISTMAS.

Brenda

[BobD Volunteer in reply to cbsrbpm]

here here

[Rellim296 in reply to BobD]

Actually I quite like to wish Seasonal / Festive Greetings, acknowledging thereby the magic moment now virtually here at last when the days start to become longer up here in the Northern Hemisphere and the nights start to shorten again.

[jeanjeannie50]

Hi Mary - That's so good to hear. My EP has talked about me going onto Flecainide. I think I'll suggest just having it as a pill in the pocket.

[jennydog]

I have used it once as a pill in the pocket. I took 100 Flecainide and 1.25 Bisoprolol. In about 90mins the AF stopped. Caromia had mentioned that you needed a combination of the 2 drugs. I carry the Flecainide with me wherever I go now and am taking 2.5 Bisoprolol daily as well. It does give you confidence to know that you stand a fighting chance of correcting things.

[Tim-S11]

How long, after your initial diagnosis of AF were you prescribed flecainide as a PIP? I'm on 7.5mg Bisoprolol but need the PIP as reassurance when I have an attack since so far, I keep on having to go to A&E which is really annoying. Thanks Tim

[MaryR in reply to Tim-S11]

Hi Tim, originally on diagnosis I was on amiodarone, clopidogrel, aspirin and a stomach acid inhibitor. After a month of feeling rotten I saw an EP privately who stopped everything and after a rest of 4 weeks he started me on Flecainide and restarted the bisoprolol. I was on this combination for several months before being told to slowly reduce the Flec until I was off it altogether. The confidence I now have in using Flec as a PIP is amazing - I just make sure I always have them on me. I can recommend it if your EP feels it is right for you

[Drounding]

I also carry a pip flecanide but never had the need to take it. A few weeks ago I had an episode and was scared of taking it at first then eventually I thought I should just take it. My heart went back into nsr after about half an hour. I still want to a@e but went home about 2 hours later. I won't question whether to take it or not in future.

Happy Christmas!

[Thomps95]

I've been on flecenaide twice daily and haven't gone into AF since (8 months so far) but was told that if I do then I can take an extra one, along with apixaban (anticoagulant) to protect me from stroke while I'm in AF. The daily flecenaide works okay but occasionally after exercise I get palpitations and feel a bit dizzy -- not full AF but something not right -- so thinking of an ablation in a few years.

[Rellim296 in reply to Thomps95]

Are you on apixaban all the time?

[Thomps95 in reply to Rellim296]

I have lone paroxysmal AF but am not on a daily anticoagulation because I have a CHA2DS2-VASc score of zero. I don't think the benefit outweighs the risks of anti coagulation.

[CDreamer in reply to Thomps95]

That is an interesting approach I have never heard of anyone else who only takes anti coag when in episodes.

[Rellim296 in reply to Thomps95]

Yes, that's very interesting, though it could also be argued - and either way - take it all the time or not at all.

[Hidden in reply to Thomps95]

Snap x4….. we have the same AF condition, AF free period, drug and CHADS.

I also decided on not taking anti-coag (Riveroxaban) and my cardio said no need to take it if I just have a short episode as it takes a longer period for a clot to develop. I expect most here would advise a 'belt and braces' approach and just take it continuously but I struggle with that approach right now.

[teach2learn in reply to Hidden]

Even with a CHADD of 3 (woman over 65 with blood pressure issues), since ablation and always normal sinus rhythm (with occasional short blips), doc said I would probably be okay without full dose anticoag. (I still take one at night because sometimes wake up in afib that goes away after moving). The risk of "bleeding out" while on anticoagulants in in an accident or other internal problem, to me, far outweigh the possibility of forming a clot--not to mention nasty purple bruising on arms and hands. Doc also said clots most likely to form only after being in afib for 24-48 hours, which never happens anymore. I had been in full-time afib for several months before ablation and never formed a clot, either, but that's just me. I'm very comfortable with decision to reduce, or even stop, anticoagulant. But if, heaven forbid, another full episode should begin, I can always go back on.

[Pdotg in reply to teach2learn]

Hello Teach2learn. My EP said exactly the same about clots forming within 24 to 48 hours, with the emphasis more on the 48 than the 24. However he still prescribed an anticoagulant, although flecainide stops the AF within 90 minutes. I'd prefer not to be on an anticoagulant. I'm confused! Perhaps this is worth starting a new post?

[teach2learn in reply to Pdotg]

Even on only half dose, yesterday, I got a couple of minor scratches on my arm loading groceries and now have two large ugly purple "bruises" (I watched them form) on my arm. Shudder to think what would happen with some internal problem or a major accident.

[Namreh]

I have neen in and out of a fib for 25 years.most doctors would not listen to me when i told them it was related to my digestive tract. I have been cardioverted many times until I found the pill in a pocket way. I take 2 150 propafenone and within 3 to 6 hours my heart converts. A huge savings from going to er three weeks ago I had an ablation and hope to have less events

[Trilby8]

I've been given Flecanide 50mg to take twice daily but convinced the Cardio that my AF was much less troublesome as I was addressing the main triggers - mechanics of eating ( avoiding dry bulky foods - not bending over after eating ) having help to reduce anxiety. Then with a cold and cough this week and rubbish sleep AF has reappeared short fast bursts but then in irregular slower rhythm so I'm considering starting Flecanide 50 twice daily - what I need to know what's the best timings of the doses around food ? Have been very scared of this drug but sooo fed up with the whole AF scenario of late - thanks Cathy

[Rellim296 in reply to Trilby8]

I used to take flecainide at 6am (or first thing in the morning) and 6pm. I waited an hour for food and didn't eat in the afternoon. I tried 11am and 11pm and found it more difficult. I took 150mgs of flecainide twice a day so 50mgs twice isn't a huge dose.

[Di1962 in reply to Rellim296]

I take Flec at 9 am and 9 pm. I have alarms set on my phone or I would forget. My co workers know the alarm tone so I get reminders from them as well. I have found it important to take on time 12 hrs apart

[Thomps95 in reply to Di1962]

This is useful information: No one told me (or maybe I wasn't listening) that it was particularly important to be consistent about the time of day that you took flecenaide and whether on an empty stomach. I was just taking it once in the morning at any point, and once at night, with little attention to the time or whether I'd eaten. Maybe I should pay more attention?

[Hidden in reply to Trilby8]

Hi Cathy, I was told by my cardio to take Flec one hour before food and only when my stomach is properly empty = 6am and 6pm (nothing eaten on this one for the previous 3 hours). It has worked fine, been on it for 8 months but looking to reduce it in 2015 (my cardio has agreed as like you I have reduced the lifestyle triggers). I expect long-term drug therapy will cause other issues.

Poor sleep could be an AF trigger (as it's an important part of many things that raise stress levels) and I struggled with this until I went onto Nutri Ultra Muscleze - a Mg supplement with potassium and L-Carintine and other stuff mixed in; that improved my sleep pattern. If you find a stockist on this one please let me know as my usually ones are sold out.

[Trilby8 in reply to Hidden]

Thanks for your helpful replies - I do need to start Flecanide really I do! All quiet today thankfully.

I've just looked on line and can find the ultra muscleze available from quite a few suppliers. I have been taking Magnesium 600mg daily for sometime also Cq 10 and a mutivitamin and mineral supplement. My sleep pattern was improving waking but able to get to sleep again - think it's just this cold that's disrupted things.

Happy Christmas to one and all Cathy

[Hidden in reply to Trilby8]

Thanks Trilby, will look for Muscleze again, some suppliers advertise but when you start the order process it comes up 'Out of Stock'.

[teach2learn in reply to Trilby8]

Interesting take on the flecainide. It never worked properly for me one way or the other, but I had the impression it was one of those that needed to be "in your system" to be effective. Using as the emergency go-to is an approach that should probably be passed by doc or pharmacist.

[Pdotg in reply to Trilby8]

Hello Trilby8. I read that you've had a cold and a cough. Have you taken anything for it? Decongestants such as pseudofed are guaranteed to set off my AF.

[Trilby8 in reply to Pdotg]

No Pdotg nothing cold remedy wise other than paracetamol - I have found previously that AF and palpitations are more problematic if I'm under the weather or tired so i suppose it's par for the course with this cold! Have taken the first Flecanide 50 mg this evening on an empty stomach but still got irregular rythmn with pulse of 80 - i have been on Diltiazem 60mg ( I couldn't cope with taking it twice daily horrible side effects) each evening for some time now so hope the two drugs in combination will settle things ?!

[Trilby8 in reply to Trilby8]

Well as I've reported I took the first Flecanide 50mg at 7pm last evening hoping it would settle the irregular HR I'd had most of the afternoon following a late lunch when I was really tired and hungry ( my problems with arrhythmia always start with the mechanics of eating aided and abetted by how I'm generally).

It did not help at all in fact I've had a rotten night despite my cold symptoms improving - my heart just 'bounced' constantly all night and sleep was not to be except for short fitful periods. I'm now back in SR at 08.20 so needless to say I will not be taking Flecanide again. I do have a repeat 7 day ECG monitor booked for 5th January - will wait to see what that says and really get to grips with getting this wretched condition sorted as best I can in 2015 - it will not rule my life as it has had a hold of me for a lot of 2014!!!

[Rellim296 in reply to Trilby8]

I'd discuss how much flecainide to take. 50mgs is not much. When I was on 100mgs twice a day, I'd start by taking an extra 100mgs if I had AF. It usually worked. When my regular dose went up to 150mgs twice, I felt I could only take an extra 50mgs when needed and it seemed a bit feeble. I'd have preferred to have kept my daily dose down and have more scope when it needed topping up. Flecainide is a powerful drug, so do give it another go, but take proper advice about how much you can or should take.

[CDreamer]

PIP worked very well for me when I only had occasional episodes. As they increased to tow or three a week instead of a year, I took daily dose. After several years, Flec ceased to be affective for me, seems that your body gets used to it so I was a big fan of PIP for as long as it is effective.

[Hidden]

I did PIP for about 4 years but rarely used it then AF kicked in a number of times in a month this year and that approach was no longer advised. On balance and given my Lone PAF, I would have gone for earlier regular Flecainide for 12 months (to stop it dead as any AF episodes generate more potentially) , while I made Lifestyle changes and then slowly wean of the Flecainide.

Probably the most frequently mentioned drug here is Bisorolol - I was never offered this. Just wondered if I am missing out on anything?

[CDreamer in reply to Hidden]

I think probably not! The effects are often as bad as the disease, only you have them all of the time! At least that was my experience.

[Hidden in reply to CDreamer]

Thank you, much appreciated.

[Jay10]

Hi Mary, I used Flecainide as PIP for quite a while before I had my ablation in 2008. This worked well for me. Since my cryo ablation I have only had cause to use it occasionally but it is still effective . Hope this helps.

Jackie

[Pdotg]

Flecainide worked within 90 minutes for me when taken as PIP. I also worked out that the sooner I took it the quicker it worked. No more hanging around hoping the AF will go away! However, the EP tells me the AF episodes that I'm not aware of - at night, for instance - are a potential problem so I now take a daily dose. (And no-one has ever told me to take it with or without food, so I find everyone's replies very interesting.)

[CDreamer in reply to Pdotg]

I was warned if you take it within 60 mins of food, either way, it can make you nauseous and throw up, in which case it wouldn't be effective, I forgot about this once and took with food, never, ever did again!

[teach2learn]

Glad to hear flecainide worked for somebody. It helps my brother, too, who found it necessary even after his third ablation. I was put on it before ablation and during healing time after, and it never had any effect--except to make the full-time afib less "violent". In other words, it was still going on, and I could feel it, just less. Since third month after ablation, I quit taking it (doc said ok at last visit), and still happily experiencing sinus rhythm with only an occasional "blip" or two a day--usually with exertion.

[Swale]

Hello MaryR, I started with Flecainide as a PIP about eight years ago. I used to slip into AF once or twice a year and each time I took 200mg of Flecainide and within two hours I was back into normal rhythm. This was working well until last year when I had about seven episodes of AF and the last time the Flecainde took over twelve hours to work. I saw my cardiologist who suggested I had an Ablation which I did in April and since I've been AF free.

[jlanc225lbadt]

I have flecainide to take one then a second one 12hours later. Sometimes though the palpitations come back within the 12hours, maybe I need a higher dose. I get strong fluttering about once a day, but true AF around once. A month.