I was diagnosed 2 yr ago with a fib, put on sotalol by local cardiologist. After 4 mo of complaining about sotalol, finally sought second opinion and saw EP. He took me off sotalol and gave me flecainide/ metoprolol as PIP. This worked great, only 4 short episodes (2-3 hr) in 2 yr untillast week. I had a 12 hour one, took PIP twice, finally stopped. This got local cardiologist all cranked up so now Im on daily meds of flecainide 150 mg twice daily, metoprolol 25mg twice daily and xarelto 20 mg daily. It's been 7 days and I feel likea bus ran me down. Im in sinus rhythm but felt better in a fib!!!. I think he over reacted. I am seeing EP next week and hoping he will be ok with going back to PIP. Any thoughts?
Daily vs PIP dosing: I was diagnosed... - Atrial Fibrillati...
Daily vs PIP dosing
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36 Replies
•
I'm seven months into this nasty journey that no one wants to join. I'm 37 yo, very healthy man before afib. I can't tolerate daily med at all, provided my age and the activities that I do with my young kids. I was once put on daily metoprolol which made me like a walking dead and my extremities were very cold and I felt tired all day long. After my own investigation and found mine was vagal afib, I weaned myself off metoprolol and felt a little bit better. At least I don't feel cold anymore. I now take PIP of propranolol, flecainide and xanax.
I think you should see a trusted EP instead of cardiologist for your heat's electrical problem and stick to EP's advice. And also do your own research and listen to your body. If I were you, I would not start daily meds yet but investigate to see if anything different from before the afib got more frequent, and correct it and see if you can lessen your episodes. If not, talk with EP again to seek other options (though there's not much option indeed!).
• in reply toli17
Thankyou, and I agree. Unfortunately, Ive already been on all the meds a week but Im pretty sure EP will taper me off. Feels like the treatment is worse than the disease! Im 65, like to be active, ride my horse, etc. The drugs will make me an invalid. EP is only a 90 min drive, I need to keep him in charge and drop cardiologist.
li17• in reply to
I don't remember exactly, but some doctors said afib treatment sometimes made patients even sicker. How to treat afib is more of a personal choice, as all treatments are really down to improving quality of life. So make sure you feel comfortable with any treatment. No offense, but I'd wish I wouldn't get afib until I'm 65 yo. I'm struggling everyday myself.
Good luck and all the best to you!
• in reply toli17
No offense taken at all, tomorrow is my 65 th bd. I am an RN and a fib made me retire early. If that would have hapoened at your age, it would have been disasterous. I do know stress plays a key factor. Best wishes to you for managing the beast!
li17• in reply to
Happy Birthday!
Yes, it is indeed a disaster to me and my family. It messed up my financial, family life, planning and kids education. I tried so hard to be strong for my family, but it's just hard. Now I just wish I can make it to my kids' adult life so that at least they have a father figure there for them although it's not as good as before 
I know what you are going through. I also am a 37 year old male. Prior to developing Afib, I used to be able to lift weights and excercise. I was very strong and fit. Now I feel like an invalid.
I am single, but hoping to get married soon. This has set me back quite a bit. I've lost thousands of dollars from lost wages and trying to find natural remedies. I had to stop taking flecenaide because it was causing harm to my body. I'd rather have palpitations than to feel deadly weak all the time.
Cheer up! I am 75 and have AF. My brother got to 80 with AF (but he died of cancer,not AF), two of my cousins have AF, one 87 (died 5 months ago of cancer) and one 90, still very much kicking - she's even going to have knee replacement.
Electrohysiologists are trying hard to come up with new techniques to manage and "cure" AF. I had the latest vein of Marshall alcohol injection. The following site discusses the RADAR, the latest new new system of mapping :
a-fib.com/2018-af-symposium...
Time is on your side. Enjoy it with your kids and wife.
Had ablation 1 month ago afterwards EP put me on Flecainide 100 x 2 per day.
I was already on to metropolol. I had the same reaction you did.
EP took me off metropolis today.
How long after you stopped taking the Flec and Tropolol did you start feeling better
• in reply tobmand
Im still on everything. Was on PIP until a fib event a week ago and cardiologist insisted I take it all daily. I thought starting me on flecainide 150 mg twice a day was over kill but... I see EP monday. Will post what he wants to do. Im hoping for going back to PIP
150x2 is the maximum dose.
I am surprised you were put on that dose from a standing start. I am not at all surprised that you are not feeling too well.
I have taken 100x2 for many years. I also take Flecainide as a PIP.
Glad you are seeing your EP Monday as you need to discuss this.
Pete
Very surprised at Flec dosage - I have been on Flec 2X50 mg a day for 10 years - only get problems with chest infections etc , but when I go over 250mg a day to go back to AF I feel bad and cild not tolerate the dose for more than a day or 2 - maybe ask if you can go back to a starter does and see how you do on that ??
Sorry you feel poorly. I have taken flecainide in both versions over the years. Your EP is your best guide, pleased you have an app next week to find a solution. Best wishes.
BobDVolunteer
Yes 300mg per day of flecainide is the max dose you can take . The beta blocker is to compliment the flecainide as that drug can cause other arrhythmias. The xarelto is an anticoagulant to help prevent an AF related stroke and whatever else you decide to stop DO NOT stop that please. I would be inclined to phone your EP and discuss.
• in reply toBobD
Im going to see him in 2 days, I have no issue with xarelto but max flec dose is extreme I think. Plus if PIP was working, why not go back to it? In 2 yr of a fib, other than original trip to ER/ hospitalization, I have converted at home with PIP, no ER , no hospitals. I thought that was pretty good.
pottypete1• in reply to
It is pretty good!
My PAF became more frequent July 17 so I was put on flecainide 50mg × 2 and diltiazem 200mg ( I do not tolerate beta blockers) . Even that low combination makes me feel quite bad and " not me".
I can't understand why you go from a pop to 300mg a day?
I
• in reply toKMRobbo
I agree
I too am very surprised that your doctor put you on maximum dosage of flecainide. It is well documented and said in many places that too much can cause irregularities. Do discuss this. A lower dose might work well.
To complicate matters. It could be that a lower dose will work well for a while, then irregularities will build up again. In which case, you and the doctor have the difficult decision, to increase or to decrease. [On a lower dose, are the irregularities due to the medicine hence decrease it, or do you need more medicine]. Since doctors are often not available, if you have time, perhaps you could ask about this situation in advance. In my view, decreasing dose is the safer way to go. You can always give a booster if you need to.
I know someone who was started on 100/100. Over a year, with some trial and error, this came down to 50 once daily using the slow release capsules.
• in reply toILowe
That sounds more reasonable. I believe I need to quit cardiologist and stick with EP.
If the medicine is worse than the disease.......?
Meds for AF are for improved QOL - I felt far worse on the meds than with no meds.
• in reply toCDreamer
Yes, and shortly after diagnosis 2 yr ago, EP really encouraged life style changes , which I did and had fewer, less aggressive events. I cannot figure out why cardiologist jumped on me so hard but Im expecting EP to be more logical, 2 days til appt.
I was on fleconaide for quite a while, but changed to tildim which doing same job. Definitely see EP. They are the specialists in electrics of thehearty
I have been on flecainide / metoprolol for a little more than four months, and have learned a few really helpful things along the way...
I take the slow release type of metoprolol once every 24 hours. I have found that by taking my dose in the evening, any sleepiness is pretty compatible with my regular sleep schedule - so changing the time of day that you take that drug is one potential “solution” to discuss with your doctor.
When I started flecainide, I had already tried propafenone as a PiP. At the high PiP doses of propafenone, I definitely felt awful when I took it, like the cure was worse than the symptoms (even though the symptoms were extremely disruptive and unpleasant).
50 mg flecainide twice a day was SO MUCH BETTER than PiP propafenone. No perceptible side effects. However, I did have breakthroughs, and one of the things I was advised to try was taking up to an additional 100 mg to try to convert to NSR. After trying this, I learned that flecainide converts my AF to flutter, and that I am one of the people that experience the proarrythmic effects of flecainide. So that’s a possibility to just be aware of, especially at higher doses.
After continued breakthroughs and a flutter ablation (to prevent the proarrythmia), my flecainide dose was increased to 100 mg twice a day, and I eventually had to increase to 150 mg twice a day, which is pretty darned effective for me. Helpful things I have learned through experience (and then confirmed with medical literature and/or discussions with my doctor’s office):
When you increase a flecainide dose, which should be done in increments of 50 mg, it takes several days (about 36 hours, for me) for the change to really take effect. This means that if it doesn’t seem to be helping right away, you need to hang on and give it a few days.
If you’re having frequent breakthroughs, even of bothersome PACs, your dose is very possibly not high enough. Doses should only be increased every 4-5 days, due to the time it takes for the level in your blood to stabilize.
With me, when tuning my dosage, it was helpful to write down times I took the medicine and times and descriptions of any symptoms. I was having breakthroughs daily, and was able to observe eventually that this happened only in the last 2-4 hours before my next dose was due. This was a clue that I needed an increase again, and one way I was able to make the drug more effective for me (without too many higher-dosage-related side effects) was to switch to 3x a day administration of 100 mg instead of taking the full 150 mg twice a day.
I do definitely have some side effects from the 300 mg per day dose that I did not have at lower dosages, so it is possible that a lower dose won’t hit you in the same way that 150 mg twice a day does.
Good luck!
I transitioned to daily flecainide 100 x2 and altenolol 12.5 after increased events. No side effects or events in past 18 months. New cardiologist strongly recommends I take Pradexa daily rather than PIP to reduce the risk of stroke.
I want to thank you all who have responded! You have given me the support to boldly go before the judge( EP, lol) and state my case with more confidence and tell cardiologist he no longer is in the game💜
CDreamer• in reply to
That’s what we do.....
Sotalol sucked for me as well, it reacts badly with copd and asthma
What or who is ep
• in reply toEddiesname
An EP ( electrophysiologist)is a cardiologist who has extra years of training an specializes in heart rhythms, like atrial fibrillation. They also do procedures such as ablations. Some say EP is like the electrician for the heart, cardiologist is the plumber.
I would have not known this had it not been for this forum. 2 yr ago when my treatment was not going well, I asked for a second opinion, which was the EP in another town 40 miles up the road. I dont think anyone would have volunteered this had I not asked.
Just to support other comments - I had more regular afib than you do and 50mg flecainide x 2 a day has effectively sorted things out, with no afib episode since Christmas.
It doesn't have to be either daily dose OR pip with flecainide. It can be both. I have agreed with my cardiologist that I take 50mg x 2 daily, and extra if I have an episode, up to a daily max of 300mg. If I were you I would ask whether I could take a much lower daily dose, with the option to take a pip dose during an episode.
• in reply to
I like that alternative! Thanks, tomorrow is the appointment.
Good news! I saw EP, he is fine with me going back to PIP( thankyou Lord!). He did say if my a fib becomes more progressive, like more than every 2-3 mo, we would need to talk daily meds and/ or ablation. Im happy with that and believe it is enough to motivate me to get serious and drop the other 30 lb and get back to exercising again
Weight is a huge factor. At the moment I'm about 10 lbs overweight and getting episodes often .Also on Metoprolol which I am weaning off as that causes weight gain anyway and as I'm Vagal AF er not really the drug I should be on. I find when I'm a bit thinner my episodes are only 2 or 3 a month. Otherwise they can spiral out of control. With HR's of 180+ for hours on end it becomes exhausting and frightening.
This has been my lot for 15 years so I do everything to minimize the harm including lots of supplements and especially Magnesium, Potassium and Taurine. Has helped immensely over the years.
We all should understand Drs really have no idea why we get AF. They understand the mechanism and what going on, but why you? why me? they just don't know.
Also they have no idea about what drugs are best and how they make us feel. You have to be your own Dr and pick what works for you.
When I was first diagnosed my Cardio told me don't worry it won't kill you and sent me home with some very dangerous meds. ie; BB's and Flecainide with very little warnings about how I might feel. I was pretty cynical of his comments at the time and did my own research. Clots, devastating strokes, bleeds... won't kill me?
Jump ahead 15 years lots of emphasis and research on dangers of AF.
EP's are the best people to help you with AF
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