I’ve been taking 10 mg of Flecainide twice a day for almost a month. My question is, how long does it take before Flecainide starts to work? I have seen no difference in my Afib, PVCs, PAC and Trigeminy. In fact, I could almost say they have gotten worse. Is it possible that Flecainide doesn’t work for some people? Just wondering if anyone else has this unfortunate situation. My heart has not been in normal SR for several months. I used to go in and out of these arrhythmias and maybe be out of it for months or maybe even a year. But now it seems like it’s here to stay and I’m seriously worried what it might be doing to my heart.
Flecainide for Afib, PVCs and PACs - Atrial Fibrillati...
Flecainide for Afib, PVCs and PACs
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Debjimmay
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I'm assuming you mean 100 mg twice a day?
50-100 mg 2x/day is a typical starting dose, but sometimes it needs to be increased to 150 mg twice a day. In that case, your EP will probably want to do some extra monitoring.
A month is a reasonable amount of time to expect to see some results, however, Flecainide does not work for everyone.
What does your cardiologist or EP say?
Jim
Yes, I’m sorry, I meant to say 100 mg twice a day. I tried to go in and edit the post, but I was unable to figure out how to do it. I don’t have appointment to see my EP until 15 July. I may call the office though and tell them that I am having terrible issues with my arrhythmias and it’s really starting to get me down. I noticed a lot of people on here are taking Bisoprpl. I may ask my EP if I can go on that. I’m taking 180 mg of Diltiazam once a day so maybe maybe changing some of my medication around may help.
Thanks for your response!
I think asking about Diltiazem either 120 or 180 ER is an excellent idea and is actually protocol in many cardiac centers in the United States.
Also if possible, you might want to document some of these episodes with a Kardia or Apple Watch device just to make sure you're not developing flutter, which can sometimes happen when you take Flecainide.
Flecainide is really a drug that needs to be monitored, especially in cases like youre and I would not wait until July 15th.
Jim
Jim, I have both the Apple Watch and Kardia. I keep all my readings, but I have never come up with one that said flutter. How would I know if I was in flutter? There are times, mostly in the evening, where it feels like my heart it is flip-flopping around and the Kardia readings will say either Sinus Rhythm with Supraventricular Ectopy or Afib.
How would I know if I was in flutter?
Kardia will not report flutter. But if the Kardia says "tachycardia" or perhaps "unclassified " and your heart rate is in the neighborhood of 150 bpm, flutter should be suspected, and the EKG might be sent to your electrophysiologist for analysis. Especially if you're on Flecainide. You could also ask your doctor for a 7 to 14 day EKG patch which will pick up everything during that time.Period.
Jim
About a week after I started taking Flecainide, I did get a reading on my Kardia for Tachycardia and my pulse was 100. I can attach a copy of this EKG reading if you would like. I’m concerned about this reading of tachycardia. I only had it that one time. This is the weekend so I can’t call the doctor. I’m seriously thinking I should be off of the Flecainide before something serious happens. I will have to wait until Monday to call. I went to the ER two weeks ago with Afib and extremely high blood pressure. Seven hours later, I came home with Afib and extremely high blood pressure. They took bloodwork and a chest x-ray which took about 15 minutes and the rest of the time I was sitting around waiting. I told myself I will not go to the ER again unless I’m in serious chest pain ready to pass out.
Feel free to post it, but to be honest often very difficult to differentiate a simple tachycardia from atrial flutter especially with a single lead EKG. That analysis best left up to your ep.
That said while it's possible it could be flutter, less likely at such a low rate. But I would still be concerned that your arrhythmias are not better after one month on flecainide possibly even worse. It's a potentially toxic drug and if it's not helping you shouldn't be on it.
Jim
I just sent the Kardia reading in to get a clinician review on it. Every time I send in a reading for Afib, the clinician review comes back as PVCs and PACs. It’s never once said Afib so I’m a little confused.
Yes, the Kardia AI can be confused by too many PVCs and PACs. But that's really good news because they are not afib. So is it possible the Flecainide is working?
Jim
No, I really don’t believe the Flecainide is working because I’ve had more Afib readings on my Kardia and Apple Watch than I had before I started taking the Flecainide. I wanted so bad for the Flecainide to work or at least help in some small way, but I don’t see that. This is so upsetting and frustrating. I’m at a lot of what I need to do anymore. I’m trusting the doctors and taking the medication, but it doesn’t seem to be helping.
No, I really don’t believe the Flecainide is working because I’ve had more Afib readings on my Kardia and Apple Watch than I had before I started taking the Flecainide.
Maybe I misunderstood, but you also said that whenever you sent your afib reading to Kardia for analysis, they told you it was not a fib, but ectopic beats.
Have you had any of your Afib readings confirmed by a doctor since you started Flecainide?
If not, I would start there before I declared the Flecainide a failure. You might be a good candidate for a 7 to 10 day EKG patch to more accurately determine your current afib burden. Ectopic beats without afib, in of themselves are usually not that serious.
Jim
I just got this clinician review back from Kardia. I sent in the EKG saying I had Tachycardia…..
SHARE this report with your healthcare provider.
Primary Rhythm ATRIAL FIBRILLATION
Clinician’s Notes
RecordingDate: 06/09/2024at1:35AM HeartRate: 100BPM
An abnormal heart rhythm due to an irregularly irregular electrical discharge in the top chamber of the heart.
Tachycardia comprises a wide of arrhythmias and can often be benign. It could be atrial flutter, but unlikely at that heart rate. Best left up to your doctor to determine what it means. But the good news is, it's not atrial fibrillation.
So again, unless you've got an ekg showing atrial fibrillation confirmed by a real doctor -- and not by just Kardia -- the possibility exists that the flecainide is working and you're not having any Afib episodes.
Jim
Iv lost count how many times i have called an ambulance, i think im on my last legs only for them to sit me in the corner and take my stats every 15 mins, then the anxiety sets in, then the panic, then a panic attack, then i get told off for panicking because my blood pressure is going bonkers and heart rate going mad. If i could have diazapam for breakfast, lunch and dinner my heart issues would take a back seat, i had valium about a year ago for a week, it was the best week i ever had i was so chilled. im on mertaziapine and a low dose of amitriptyline now.
I sympathize with you totally. It does seem I start to panic when my Kardia Reading says Afib which causes my heart rate to increase and my blood pressure to go up. So I start thinking I need to go to the emergency room not realizing I’m in a full-blown panic attack. I actually find the only relief I have with this condition is to take a Xanax which causes me to relax and not notice the irregular beat so much. The only problem is the cardiologist will not prescribed Xanax and I don’t know why because it’s the only thing that seems to keep me calm down.
normally, per the protocol, you should never take Flecainide without Bisoprolol, to avoid extra arrhythmia.
Diltiazem is rate control also.i was on it.
Hi
It became my life saver med. With over 200bpm BBs only brought it down to 186 and another Biso to 156.
It does affect the 47avg h/rate at night.
I now get no symptoms with persistent AF and my heart rate (pulse) and therefore rhymn is controlled.
cheri JOY. 75. (NZ)
I am asthmatic and took Flecainide on its own, without a beta blocker, for 12 years. It reduced my episodes of AF to one or two ten minute episodes a year. After 12/13 years I was found to be in persistent, though asymptomatic, AF. That was 7 to 8 years ago. It hasn't reverted to normal rhythm, so is permanent AF.
Not always. I did take both but developed Bradycardia so was instructed to stop taking Bisoprolol. For some years I have now been taking Flecainide 2 x 100mg twice a day without any problems.
Pete
I am awaiting confirmation that I can take flecainide for the exact same reasons as you, so I hope it does work as an ablation in the UK will be a long wait, most likely. You have pretty much described my condition of late. Yesterday was full of ectopic rhythm, with AF itself from 8.00pm till midnight, then calm overnight, but reappearing for half an hour this morning.
Steve
Yes, sleeping at night is my only relief from all my arrhythmias during the day. I take anti anxiety medication or Melatonin gummies every night to knock me out. As soon as I wake up in the morning, my pulsatile tinnitus is going off in my ear, letting me know my arrhythmias are there and nothing has changed. My husband and friends and family don’t seem to understand how badly this affects me. There are times I think they believe I’m exaggerating. No one can possibly understand how much this terrible affliction affects you unless you are dealing with it yourself.
I take my hat off to you if you have to cope with tinnitus as well very distressing condition👏👏
I have afib and tinnitus.. Awful
The heartbeat sound in the ear can be a very distracting thing. I only get that now and then, but I do constantly hear a high-pitched ringing sound which, most of the time, I cope with well enough.
I suspect it's impossible for another to empathise unless they have arrhythmias, though. The word "palpitations" is like a few others that people fail to take seriously such as "anxiety", "insomnia" and even, "depression". These re words that everyone has used at some point to describe a minor version they have suffered which leaves them to feel they know all about it. But they don't - not a clue.
Steve
Tinnitus is a side effect of flecaininde! I had it when I took it but it was not as bad as you describe but I did hear every beat. Mostly I was in NSR when on flec.Perhaps your EP / cardiologist could adjust the dose to reduce the effect? I dont know if that is possible.
I thought it was worse at night when trying to go to sleep.
Are you sure you have that right? The dose of Flecainide I take twice daily which works very well for me is 100mg twice daily. And I don’t take Bisoprolol with it as the lowest dose of that brought my heart rate down too low. We know that we are all different but many doctors don’t seem to appreciate that! Good luck!
Yes, I accidentally wrote down 10 instead of 100. I take 100 mg of Flecainide twice a day and I take 180 mg of Diltiazem once a day. My Apple Watch tells me my heart rate goes down to 40 BPM. My blood pressure fluctuates from 87/68 to 147/111. It’s hard for me to tell if it’s the medication I’m on that’s s causing these readings or what’s going on.
I don’t know what Diltiazem is or what it’s for but if it is anything like Bisoprolol perhaps that’s where the problem lies. Are the readings you report from a blood pressure machine, as I have but rarely use now, or something else that might not be as accurate? But “Don’t panic!” as that will just make things worse.
Diltiazem is a calcium channel blocker which acts as a rate control medication for afib. I had it because the two beta blockers I tried Bisoprolol and atenolol both made me feel very tired, ill and reduced resting HR too much in the case of bisop.
But isn’t that what Flecainide is - a calcium channel blocker? If so that’s two of the same sort of stuff? Or I may be wrong. Either way Flecainide has put an end to my episodes though it might have added to my fatigue.
No Flecainide is a class IC antiarrhythmic. ( note the classes are beyond my understanding you need medic to explain !)
It is worth noting that I developed atrial flutter which my EP put down to the flecainide DESPITE being on Diltiazem. But it did rate control the flutter at a pretty constant 140bpm ( flutter can be much higher).
I bought and read a lot of books and bought"a lot of music to listen to during the month
I was waiting for my flutter ablation!
Gosh! Don’t know anything about flutter! My heart has been fine on this dose of Flecainide, but we are all different and at 80, I don’t fancy the idea of the ops and haven’t been offered one thankfully!
I didn’t know that much about flutter either until I started on Flecainide. Like you, I don’t Like the idea of the different options available if the Flecainide doesn’t work. My EP doctor has mentioned ablation but I’d rather try everything I can before going that route.
The BP of 87/68 is touching on low and might be symptomatic. - although there's not much that can be done except making sure you are not dehydrated for any reason (which is not unlikely). However, if you are taking your BP while you having AF or ectopic beats, it might not be accurate.
Steve
It is standard practice in the UK to take a beta blocker suchbas bisoprolol to.prevent a form of arrhythmia called atrial flutter, and others. Flecanide can provoke these . It is wise to contact your medics.It took about a month/6 weeks for me to benefit.
Best wishes
Flecanide disnt work for me either. Twice I tried it and both times it made my Afib worse. We speculate that it led to another serious incident but we’ll never have proof. I would contact your doctor as soon as possible as if there is no benefit, it’s not worth the risk.
Side note: I know Flecanide works for the many, not the few and it’s a great drug for those it helps.
Good luck 🤞
All meds and our reactions are personal! There are standard prescriptions they try but in the end we all respond differently. You have definitely given more than enough time to know- I’d get a call in to your Dr and request a change! Best wishes
Hi
An anti-arrhymnic meds is not OK for me. Why, cause my heart structure is abnormal.
I read that particularly anti-arrhymnic meds are risky drugs and can make rythmn worse.
I was told that my new (then new) introduced CCB Calcium Channel Blocker by controlling my rapid heart rate (pulse) is operating as an anti-rhymnic med by slowing it from over 200 to 60s Day. And surprisingly my 47bpm avge Night stays the same.
So you are doing the right thing in narrowing the selection of meds down to Flec.. It is renown to cause the rhymn to become worse.
Seek medical support a.s.a.p.
cheri JOY. 75. (NZ)
Flecainide did not suit me. It made me feel worse. I take Diltiazem and Propafenone. Electrophysiologist told me the two drugs are in the same class of drugs.
I tried too many rhythm meds to list, but yes, it is common for many of them not to work and can actually make it worse. After maybe 12 meds, I am finally achieving success with Verapamil but it has been a LONG 18 months of crazy rhythms and frustrating meds/side effects. If it isn't working, try again.
So happy you found something that works for you! That’s wonderful. I think what helps is if you have a doctor that truly cares about you and wants to work with you and will spend some time with you and not make you feel like your problem isn’t that serious or you’re taking up too much of his time. I need to find one of those doctors.
It is awful and nobody understands unless they've experienced AF. Flecainide worked for me, but the dose was put up to 100mg x3 a day for a short while. It stopped the AF. Then we reduced to 100mg x 2 a day. BUT my EP was adamant that I take Bisoprolol with jt to stop a certain arrhythmia that Flecainide can cause. Some people do not take Bisoprolol with Flecainide but many people do need to do it. Perhaps you could be one of those....Maybe you could think again about an ablation? That's one way to try and get off the drugs. If the AF has become persistent it's better done soon, as persistent AF is harder to treat. Good luck ❤️
Yes, you are absolutely right! My husband is not very sympathetic and I help telling him he doesn’t have it so there is no way he can understand what it’s like and what I go through. I woke up at 3am this morning. My heart rate was all over the place so of course I couldn’t go back to sleep. Kardia EKG showed Afib. How long were you on Flecainide before it started to help you? I’m taking 100 mg twice a day but maybe it needs to be increased 3 times a day like you. I seem to have more problems with PACs, PVCs, and Trigeminy than I do with Afib. Do you know if taking Flecainide helps with these other arrhythmias or is it used only for Afib?
Yes it's hard to convey the sense of panic and helplessness AF can cause.
I had a few false starts with Flecainide. I get gastritis from time to time and at first the Flecainide triggered it,so I came off it. I was only on blood pressure medications (Lisinopril and Indapamide) Bisoprolol and Apixaban. Then Amioderone was suggested and I didn't want that so persevered with the Flecainide. It did make a difference after a few days on the 300mg, and the improvement continued when it was reduced to 200mg/ (100×2)
But the AF came back and I had a cardioversion and 2 ablations. The second worked well, though I still needed the Flecainide. The AF came back when I stopped it, but the Flecainide kept it nicely at bay.
However, once the AF was at bay my underlying heartrate was low and I needed a pacemaker. I'm now off Flecainide. I think I feel better without it, but it's hard to remember. It served me well but might nor be right for you.
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