PIP or twist: Hi all on Planet AF, have... - Atrial Fibrillati...

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PIP or twist

Maureens46 profile image
23 Replies

Hi all on Planet AF, have a little query. Wondering how many of my fellow sufferers take Flecanide as a PIP to correct our irregular rhythm.? The reason for my asking is I recently had fourteen (14) episodes of PAF since my New Hip operation in November. Because of the frequency I arranged to see an E P privately. He enquired how many times i had used PIP and i said mostly every time. When he had picked himself off the floor he explained that PIP was not meant to be used more than three times A YEAR.....

When I recovered conscienceness we both had a good laugh which promptly triggered an AF attack. However he has put me on his lengthy waiting list for a Cryoablation.

Just wondering if anyone in the same boat as myself. Incidentally the latest episode triggered by washing my hair. (What bit i have left) Thinking of selling my comb and giving my hair dryer to charity. Meantime we plod on hoping 2018 brings us all good health and great advancements is tackling our illness. As always my philosophy is "What can't be cured must be endured " So a toast to all our contributors and i sincerely hope that Bob D has recovered from the severe bout of Ticks he had before Christmas.

Love Mo x

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Maureens46
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23 Replies
UScore profile image
UScore

That's interesting. I would have thought you take Flecanide as PiP whenever you need it, as long as it works. Some people take it every day, so if it's controlling AF then surely 14 times a year is better than 365 times a year?

I've never heard of the 3 times a year rule. No-one's ever put a limit on my use (apart from 300mg a day)

I've taken it as PiP 3 times in 2017, and it was only prescribed in June.

UScore profile image
UScore in reply to UScore

Also, why would you not take it every time you get visited by AF?

What? Three times a year? Why so?

I took 300mgs of flecainide every day for about 8 months.

BobD profile image
BobDVolunteer

Thanks Mo yes I have and if anybody wants to know what I got for Christmas is was FAT.

I have never heard that, only that the max I could take in 24hours was 300mgs. I had/have a great relationship with my EP and he has never come up with that one. As others may say lots of people are on regular flecainide. Hope the ablation is soon for you.

jeanjeannie50 profile image
jeanjeannie50

I take 2 x 100mg of flecainide along with a beta blocker. When my heart was playing up earlier in the year I rang my AF nurse to see if I could raise the dose for a few days in the hope my AF would revert. She said I couldn't as the 300mg per day dose only applied to people who were taking it as a PIP. I guess EP's all have different ideas of what's right.

Jean

in reply to jeanjeannie50

See my response above. It was my cardiologist who increased my dose from 100mg x 2 per day to 150 x 2 daily.

When I stopped taking flecainide on a daily basis I was told to take 50mgs as a PIP if AF occurred, and another 50 an hour later if there was no joy. I have not found that very effective and have not been bothering to take any flecainide at all as my AF subsides on its own after a while.

jeanjeannie50 profile image
jeanjeannie50 in reply to

Its interesting that you were able to stop taking such a high dose with no effects. I took flec as a PIP, but the attacks just got so bad I ended up taking it all the time. I sometimes wonder whether flec as a PIP was the cause of more AF for me. I wish I could be brave enough to stop taking it like you.

Jean

in reply to jeanjeannie50

I stopped flecainide after my second ablation - I went down to 100mgs x 2 on the day of the ablation and was told to drop to 50mgs per day some six weeks later and then stopped taking it 4 months after the ablation I still got mild AF though. I had a third ablation about 2 years ago but remain much the same.

I was having attacks of SVT 27 years ago and don't feel I am significantly worse now. What bothers me slightly is that I don't think I see my condition as being as bad as I think the doctors think it is. I consider myself very lucky to be as I am currently.

jennydog profile image
jennydog

My EP is highly rated. I saw him in June this year for my annual check - up. I have mild AF since my ablation. A second ablation will not be an option due to fibrosis.

I explained that I tended to wait and hope that an episode would end by itself. He told me that was not good practice. Once AF started I was to wait 20 minutes, if it didn't stop then I was to take 100 flecainide. If that didn't work within 3 hours then I was to take another 100. Tops is 300/day.

If I deteriorate to 3 episodes per week then I am to start taking 2 x 50 flecainide daily.

We also discussed what I had learned on this site - that flecainide is non-addictive and inexpensive. There was no mention of restricting its use.

in reply to jennydog

Yes, I suspect that it is not good practice to let AF run which is what I do. A year ago my EP suggested daily flecainide and I wasn't keen and he offered another ablation and I turned that down too, saying that I'm not unhappy as I am. I get AF roughly every couple of weeks. I've just gone for 25 clear days. At my appointment just before Christmas I saw the nurse and have been discharged as I said I was happy. I can ask for another appointment if there is a change.

in reply to jennydog

Interesting Jenny, at a recent support group meeting, I asked if it was better to take 100 mg after 30 mins and if no improvement, take a further 100 mg after an hour or so, followed by the "final" daily dose of 100 mg.. The response from the learned team of medical specialists was NO...the PiP principle was to take the maximum permitted daily dose (normally 300 mg) in one go otherwise the chemical cardio version could fail.

I also have never heard of PiP being limited to 3 times a year.

jennydog profile image
jennydog in reply to

@ Flapjack I think that taking the flecainide after 20 mins is to help prevent the heart getting into the habit of fibrillating. So far 100 stops the AF within 2 hrs for me.I remember Bob writing about the 300 hit but I wouldn't dare to take 300 in one go. I don't have a rate problem. As far as I know 130 has been my maximum. Things would obviously be different if my heart was doing 200!!!

To answer your questions, Maureen, Flecainide is commonly taken as PIP.

Second, I'm not sure to which "boat" you are referring🙂

Since you may have a long wait for an NHS ablation, I wonder what you are taking to prevent your PAF?

Is it possible your EP meant that if you are having to use your Flecainide more than 3 times a year, then you should be on it regularly?

You could ask EP's secretary for a copy of his letter to your GP to clarify this.

Maureens46 profile image
Maureens46 in reply to

Hi Badger,

Taking Bisoprolol 1.25mg daily as I have a low pulse. My resting heart beat around 45 bmp. And Flecanide 100mg×2 as PIP. So far the Flecanide has worked but concerned that because i use it so often it may become ineffective. Not sure where your reference to "boat" comes from. Asking my GP for a copy of my Ep's letter is a very good point thanks.

in reply to Maureens46

Hi Maureen

Sorry it was just that you asked whether anyone else was in the same boat and I did not understand what you meant.

If you are having to take Flecainide 200 mgs so often, I wonder if taking say 100 mgs twice a day, every day might be reasonable. That is to say, instead of PIP 200 mgs.

Just a thought, but you should not change anything without talking to your GP first. I am not a doctor. There may be very good reasons why you are not on regular Flecainide.

Maureens46 profile image
Maureens46 in reply to

Hi Badger,

Already tried to take Flecanide daily but it didn't stop the attacks so reverted to PIP. So looking forward to my first Ablation. Thanks for your posts.

Mo

Bob56 profile image
Bob56

After my ablation, I was taken off my regular dose of Flecainide for a few months. I had actually taken 50mg daily for almost 20 years and it was my "friend" with little in the way of side effects. However, it had stopped being effective, hence the ablation. Unfortunately the AF returned, but having gone back on my same dose of Flecainide ( at the doctors suggestion), I haven't had an episode since. The ablation seems to have arrested the progression of the AF with the help of Flecainide as a regular medication, rather than as a PIP. I can't offer you any medical advice but that is what is works for me, for now at least.

WendyWu20 profile image
WendyWu20

I used to take Bisoprolol (which made me feel lousy even when in NSR), then a high dose of Verapamil which didn't help the AF at all. Am now just on Flecainide 50mg twice a day, I can take more as a PIP if I go into AF.

For the past month I've been having AF episodes three times a week. I suspect over eating and an increase in weight to be the cause. I usually take an extra 100mg of Flecainide as soon as I feel my heart going out of NSR; I don't fancy taking any more than that. It never stops the episode, however, it now only lasts for 6 - 12 hours. Whereas previously (pre-Flecainide) the AF episodes lasted for three days.

My GP had no idea of dosage, when given basic instructions by the cardiologist to start me on Flecainide, I had to educate him based on the research I'd done from this site and elsewhere :o). During my one visit to an EP, he didn't mention Flecainide dosage at all.

ILowe profile image
ILowe

In the days when I was not on prophylaxis, my British Consultant told me, PIP = both Flecainide and Bisoprolol. She encouraged me to stay on Bisoprolol, and take Flecainide as PIP, but, when I was chesty, therefore stopped Bisoprolol, I would need to take both.

The main reason seems to be that Bisoprolol limits the tendency of Flecainide to create tachycardia etc.

I used to go on and off Flecainide, and rely on PIP. But, last year, I did not see the warning signs of life -- too much stress over a long period. One day, PIP did not work. After getting me back into NSR using Chemical Cardioversion, the doctor advised me to stay on low doses of Flecainide, to hopefully keep the lid on it for as long as possible.

The doctor I use when abroad thinks that prophylaxis for AF is in a rhythm controller, Flecainide, but, once AF sets in, then he would shift me to rate controllers.

Right now, I am on small dose Flecainide, and if I get tachycardia (often a prelude to AF), even a mild form, I take Bisoprolol as PIP!! Go figure. NO one told me to try that, but it works for me.

KathFrances profile image
KathFrances

PIP restricted to 3 times a year? I haven't heard of this and it doesn't ring true to me, seeing as how Flecainide can be taken daily. I have Flecainide as PIP and am instructed by the cardio to take 100mg (plus 2.5mg bisoprolol) every time I get an AF episode, which happens about every 8 weeks.

IainB profile image
IainB

Three months ago, following a stay in Hospital for a blood infection which brought on some paf, my regular dose of Flec was increased from 200mg to 300mg. (One dose daily, slow release capsules). Took a few weeks but the ticker’s now running again like a Swiss watch!

Blood tests show that kidney stats are fine.

afibtennis profile image
afibtennis

I was taking Flecanaide as a PIP but my episdodes were increasing. I now take 100 mg twice a day and haven't had an episode in over a year.

debbie201 profile image
debbie201

Hi, Im newbie! I have paroxysmal AF, had several episodes in the past few years. I was on calcium channel blocker Adizem but when last went to A&E they put me on Flec and Adizem, to be taken every day. However, when i got to see my cardiac nurse, I asked if I could use the Flec as PIP instead of taking every day, especially as I only got an attack once very few months, fingers crossed, touch wood and all that, so he said yes but I didnt ask him how to take it when I had an attack. I have been a bit scared of taking it to be honest with all the bad press it has had over the years, so I only take 50mg and my attacks are lasting for around 9 hours these last two times, so I am going to try the 50 and 50 after a couple of hours and see if that works better. I dont take the Adizem as it didnt really do anything for me when I was on it daily, I also told my nurse that and he was fine with my decision.

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