PIP advice please: hi all some of you... - Atrial Fibrillati...

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PIP advice please

OzJames profile image
26 Replies

hi all some of you know my story but I’ve had PAF for 29 years about 8 times in that period. I went back in AF in August and went on regime of Flecainide, Metropolol and Apixiban.

Decided to do Cardioversion end of September after being on drugs for a month. Went off all drugs after a few weeks told CHAD score was zero. So no drugs for nearly 2 months. All went smoothly until yesterday. Woke up after a nightmare with palpitations, later in the day my Apple Watch told me AF. I couldn’t get onto Cardiologist but wanted to start PIP so went onto my previous dosage 100mg Flec 25 mg Metro and Apixiban.

From what I’ve read for PIP the dose of Flecainide should be higher, any thoughts please?

Lifestyle wise I’ve removed some triggers like alcohol and coffee though my stress levels peaked again as my dog died 10 days ago and she was my best mate. I started taking Magnesium Taurate 150mg one a day and a brisk walk 5kms daily for nearly 3 months since my Cardioversion , cheers for your help!

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OzJames
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26 Replies
BobD profile image
BobDVolunteer

We really can't advise on PIP dose as this should have been explained to you by your EP. You are right in thinking it is generally higher but the single most important thing is to understand that you must never take more than 300mg in any 24 hour period.

OzJames profile image
OzJames in reply to BobD

thanks Bob.. hopefully I hear something back from his office today, I think I read somewhere that PIP is most effective in first 48 hours of AF

CDreamer profile image
CDreamer in reply to OzJames

I was told to take Flec as a PIP as soon as AF started and the dosage was the full 300mg BUT the first time I took that dosage was in my GP surgery attached to ECG and had to stay under supervision for 3 hours. And I think that is the important factor and why others may be advised to take lower doses if not under medical supervision.

I guess everyone reacts very differently and doctors differ in their advice, according to your full medical history so I would wait for your cardiologist to get back to you before doing anything else.

OzJames profile image
OzJames in reply to CDreamer

Thanks for reply and I agree. I’ve started my previous dosage last night 100mg twice a day. The Cardio will get me in to see one of his team in the morning if I’m still in AF to work out way forward

Singwell profile image
Singwell

As Bob says, taking PiP according to advice. I've only ever taken extra PiP on top of maintenance dose of 50mg X 2 if AF broke through the defense so to speak. I'm 54 kilos 66 years old and female. I was advised to take an extra 50 or 100 and wait. (In my case I never took 100 as I don't like the effect ). Wait 40-60 mins. I was told 'limit of 300mg within 24 hours' and used to take a further 50 if needed after the wait. I never needed more than 150 altogether to knock an episode on the head. And even then I didn't like the effect of the chemical cardioversion. Hope this is of use!

OzJames profile image
OzJames

thanks Singwell so does that mean you take the drug daily ie. 50mg twice a day then add as you've indicated above?

bassets profile image
bassets

Sorry about your dog - that's hard. I hope you can relax after sorting out your PIP dose with your doctor. I have a maintenance dose of 50 mg twice a day and take a dose of 50mg if I need it. I find anything more than that doesn't suit me but would up it if I had to to get back to sinus rhythm.

OzJames profile image
OzJames in reply to bassets

thanks Bassets I do miss my dog she was my shadow. Also do you take Metropolol with your Flecainide?

bassets profile image
bassets in reply to OzJames

I take Adizem which is dilitiazem, a calcium channel blocker as I have asthma, which is similar to Metropolo, and Losartan. (We have a rescue basset hound and a Roumainian rescue now, the latest in a plethora of mutts) :)

OzJames profile image
OzJames in reply to bassets

ahh ok, there’s so many different drugs hard to know if we’re on the best one for us. Ours was an Aussie Shepherd

Mcopt profile image
Mcopt

Hi so sorry about your loss Afib does seem to be so related to stress and in many cases the effects don't show themselves until a while after the event. I am hoping to come off flecanide 100 mg twice a day and go on to a pill in the pocket regime I am see my consultant next week the flecainide I am taking knocked a 5 week episode out after just 2 days but I am not comfortable taking flecainide full time. From what I have read the pip dose is around 300mg in one shot but your consultant must confirm this for you. Perhaps have a look into mindfulness it can really help with AFib especially in difficult times there are plenty of apps you can get on your phone. All the best be kind to yourself.

OzJames profile image
OzJames in reply to Mcopt

appreciate your thoughts and I’ll look for those mindfulness apps. All the best with your journey

Rubymurray25 profile image
Rubymurray25

I know the PIP dosage does depend on body weight as well and as others have advised only your cardiologist knowing your history can advise. I would add that I was told ( 78kg male ) and having had my first 300mg hit in hospital , it should work for me going forward. I have taken it about 8 times with 5 being successful during AF episodes. The last time at hospital when it didn't work I was told it was Sinus Bradycardia I was expereincing and the Flec wouldn't have worked anyway!! Since then I have had an echocardiogram and awaiting the results. All a bit of a moving target, but I am confident the cardiologist will find the best solution and combination of meds. I have had 2 previous ablations and am on Dronedarone currently.

OzJames profile image
OzJames in reply to Rubymurray25

thanks Ruby for your input and it is a moving target! Good luck going forward

Windlepoons profile image
Windlepoons

I can't add any advice, but I would like to say I'm so sorry about losing your dog. They are such a part of the family.💖

OzJames profile image
OzJames in reply to Windlepoons

thanks Windlepoons appreciate your reply and yes they are so much part of the family

iris1205 profile image
iris1205

So sorry James.... blessed dog and AF,,, argh

FIRST as you know we cannot recommend, but I can say what I do!

I weigh 60kilos, female 67, 5'5 1/2

I stopped the BB as I tested with and without several times - as for me, it did not help the afib/flutter but it did leave me breathless. My EP agreed, drop it!

Flecanaide... my understanding was max per day 300mg. My max dose in one shot is 150mg and that will still take between 5-8 hours. The alternative is 18-24 hours, so it helps.

Hope you find success and calm with the combinations which work for you!

Take care, Annie

OzJames profile image
OzJames in reply to iris1205

thanks Annie appreciate your reply. Can I ask do you take Flecainide daily as well or just PIP. If just PIP how long has that worked for you

iris1205 profile image
iris1205

Sure James, No, I do not take daily as we found years ago, or suppose, that Flecainide caused me to become pro-arrythmia with the daily dose. After my 5th ablation it reduced my episodes from 24-35 hours to 5-8. Progress, I am nonetheless awaiting the date for my 6th intervention. I have tried all the other meds for AF without success, but the Fleca actually reduces the bpm and duration.

Best wishes- Annie

OzJames profile image
OzJames in reply to iris1205

thanks again, I’m similar on the Metro.. feel I can’t breathe as before. My average HR in AF is only about 85 with no drugs, so I guess the Metro is to reduce the high HR spikes. Good luck with your interventions, have you tried Magnesium Bysglycinate or Magnesium Taurate I’ve read it can help some people

iris1205 profile image
iris1205

AF for me without the fleca was 170-210 bpm, 2-3 x per week at 24-35 hours prior to the last ablation. So this helps at least!

Thank you yes, I've tried both Mg and

3 month diet of NO gluten, sugar, dairy, alcohol

I meditate, yoga, I am a teacher of HeartMath HRV training...

Still open to any suggestions! Thank you, we are all in here pitching for each us!

Peacefulneedshelp profile image
Peacefulneedshelp in reply to iris1205

From your comment it sounds like you understand and teach HRV I am trying to understand it. I recently started on a beta blocker because of a leaky valve I actually feel better. I have been watching my HRV which seems low indicating stress. I am not sure if I understand that correctly. The book I read said try to get the HRV around 50 normally I am around 34. But last night I woke up when I tried to fall back to sleep something felt off, I took an ECG on my watch and sure enough I was in AFib. When I checked my HRV later in the day, around that time the reading peaked at 210. It was about that time I converted on my own. I am completely confused on these readings. Is there somewhere you can refer me to, to gain a better understanding?

OzJames profile image
OzJames in reply to iris1205

I’m so grateful… this group have a wealth of information it’s a great place to share

iris1205 profile image
iris1205

The best group I know are the folks who really developed this work a long time ago.. 29 years of research!

HeartMath. Their devices are great too, easy to use with a smart phone!

Good luck Peacefulneedshelp! ...

PS, stress with what we live with is fair - we can only "control" how we respond to it!

Heartrun profile image
Heartrun

As others have said, each of us is a bit different in our symptoms and reactions to treatment and med changes. I can only share my story. USA, Male, 69 yrs, 81 kilo, runner since I was age 22, 15 years ago first episode of AF. Been dealing with PAF since that first episode where I was cardio converted. Was originally started on Flecainide at very low dosage twice a day and after a year of not noticing any episodes and several 24 hour holter-monitor tests showing nothing my electrophysiologist recommended PIP. Over the next 14 years I would have an AF episode once or twice a year but the PIP (less than 50 mg) cleared it up within an hour. Fast forward to July of this year and I went into AF and nothing short of 150 mg followed by another 150 mg an hour later if it didn't clear would get me back in NSR that day. My electrophysiologist attempted lower dosages starting at 75mg twice a day that first week of July but I would pop back in the next day. He worked me up to 100 mg twice a day and asked me to stay at that dosage for a couple weeks even if I was in AF part of the time. By the end of July having gone into AF everyday he put me on 150mg twice a day and Metoprolol 25mg once a day. I have not had an AF episode since then and in September he recommended dropping my Flecainide to 125 mg twice a day and (at my request allowed me to take half a Metoprolol once a day because my running stamina was taking a hit as my heart rate seemed clamped down and I could not get at my usual running pace. My average resting heart rate also dropped from 42 down to 36). I hope to try dropping my Flecainide each of the following months in 2023 (with EP's approval) and although I doubt PIP will ever be my method again it at least brings my dosage further and further below the 300 mg maximum daily allowed and gives me a little more room in the future to raise dosage back up and potentially put off additional medications/surgery any sooner than necessary.

OzJames profile image
OzJames in reply to Heartrun

thanks that’s helpful to understand the journey yes we are all different I’m 65 now but I too was an avid runner dealing with PAF for 29 years one episode every 5 years then 2 since August this year

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