Ten months post third ablation, I tried to stop, cold turkey, Propafenone 300mg x 2. I lasted 6 days before going back into AF for 4 1/2 hours.
Recently at one year and ten months, I tried to wean (not cold turkey this time) myself off now a lower dose, Propafenone 150 x 2. This weaning lasted 12 days before back in AF again lasting 1 1/2 hours. But, now , back on Propafenone 150 x 2 , I am getting a high heart rate of 90 - 100 b.p.m. or tachycardia up to 110 b.p.m.. Also, my usual high blood pressure is much lower since this AF attack. I do have a phone consultation with my EP on Monday.
For those who have had more than two ablations, are you still on anti-arrhythmic drugs, and for how long have you been taking them? How long must you continue to take them? Is anyone anti-arrhythmic drug free after a third ablation?
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cuore
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I have had 4 ablations (2 for SVT, 1 for atrial flutter and AF, and another for AF). My last ablation was two years ago and I am still on a low dose (25mg) of Atenolol daily. There’s no talk of taking me off it. I still get a big of tachycardia from time to time and because I’ve had so many different arrhythmias and complications my EP Kees a close eye on me.
I've had 3 ablations and am now in constant lowish beat AF. I still take a small dose of Flecainide and a beta blocker, but live a fairly normal life with quite a good energy level.
I think our hearts adapt to the restraint of taking drugs and if we stop it's a bit like letting a dog off a lead. After having an ablation I sometimes wonder if we stopped our drugs, put up with a racing heart for a while, whether our heart would naturally return to a normal sinus rhythm.
I've tried it twice CD and each time I was fine for about 6 months. Both AF free periods were mostly over the summer months starting around April with AF returning October/November. I tried it a third time, but chickened out going through the heart adjusting period as AF attacks were draining me and I wanted to be out walking in the sunshine etc.
I have faithfully followed your posts to know you are in permanent AF but still taking an anti-arrhythmic drug along with your beta blocker. So, in your case, your anti-arrhythmic drug was not stopped after your third ablation.
After three ablations, I am too afraid to ever try "to put up with a racing heart for a while" in case I create more entrenched pathways to never return to sinus. I was told I was one of the most complicated cases at the six month persistent stage, and had I not had an ablation at the six month stage I never would have returned to sinus. I want to stop without the time period of a racing heart.
Right now, I just wanted to be anti-arrhythmic drug free . I am taking an anti-coagulant and blood pressure pills, so I wanted to reduce my cocktail of prescription pills. The way I'm going , it does not seem I am going to make it.
After my third ablation my drugs were stopped the day of the procedure. When I went to leave hospital the next day I went into fast AF and had to go back on them and stay for another day. I have to be honest and say that as I grow older I wonder how many years I have left of my life. If I can stay as I am taking pills and feeling better than I have for years then I will continue with them.
If I were younger then I may possibly fight against taking my AF medication. I just wonder if they slow down my heart, do they slow down any other organs in my body?
Your reply is most interesting because it makes me ask the question why some EPs stop the drugs after ablation and some do not. I would venture to say that the stopping of the drugs would have something to do with whether the EP has ablated all the signals or not. So, your stopping your drugs right after third would make me think that all the signals had been blocked.
When I apply that line of thinking to myself, it doesn't work because my second ablation lasted only an hour, and my report says that all was blocked.Still, drugs (Amiodarone specifically ) were not stopped. Anyway, I got a reconnection so had to have that ablated as well as other areas that acted up for my third ablation.
Your question of a corollary slowing down of organs does make us ponder whether to keep fighting to get off drugs or to downplay effects. I would think the answer is complex.
Yes, it's certainly odd how EP's have different ideas re taking drugs after an ablation. I believe it's also the scar tissue that forms after an ablation that blocks the rogue heart signals, or at least that's what I've read on this forum.
Before any of my ablations I wish I'd known how a change of diet could have helped. At that time I was bombarding my body with artificial sweeteners - we live and learn!
I still take Flecainide every day because I did try coming off the drug once but was back in AF within days. I am not aware of any obvious side effects from continuing with the medication.
Although the reduction and cessation of taking Flecainide has been discussed I have, with my EPs blessing taken the view that it is not worth the risk any more.
Unlike many I have no issues with lifetime medication.
Before I stopped the 300mg x 2 Propafenone at 10 months after my third ablation, I did consult my Bordeaux EP who had done the ablation. Since I was doing so well, he though it was fine since I was requesting it.
This time, 1 year and 10 months post third, I consulted my local EP because I am not under the French medical system and felt I might be imposing. I do have an appointment with my local EP Monday. I am sure his prognosis will be to stay on drugs although he may change or add to the one I am on.
For me, Propafenone does affect my kidneys because when the dosage was reduced, my kidney GFR went up to 51, still below the normal range. Also the drug does affect my short term memory, and does give me constipation. In the past I have been on Amiodarone and also Flecainide with Diltazem chaser. Those are another story.
Am with you Pete. My P-AF occurred as a comsequence of sucessful cancer treatment. The EP told me Im not a suitable candidate for treatment because it could be other parts of the heart are affected so its meds or nothing for me. The meds make a difference but since the b12 jabs and going gluten free Ive been miles better.....long may that continue!! .
I thought you had said that for the final month, you took the drug once a day for two weeks and the other two weeks every other day? So, in reality, the last month of that year, you tapered off.
Few questions: what dose were you on; did your EP instruct the weaning, and you had no arrhythmia during that year?
Have you been told what "different arrhythmia" you have? I have a lot of "unclassified" on my one lead Kardia, so I also think I have developed some "different arrhythmia" in trying to stop Propafenone.
Started paroxysmal atrial tachycardia in around 2017. Had ablation for that in 2019. Now not sure what it is now but should know after 12th April when I next speak to my EP after 72 hour monitor a week before last. Regular sinus rhythm but swings between mid 50s and 115 whatever it feels like doing regardless of my activity. No AF I an aware of though!
I don't understand how ablation is seen as successful when there is still a necessity to take antiarrhythmic drugs. I thought the idea was to do the proceedure to eliminate this? ( And restore NSR of course)It seems a bit pointless ? Sorry you are not seeking to be able to reduce or remove the drug.
Like Pete the Flecainide didn't work for me before the ablation. But since the ablation I feel better. The AF was persistent, now it is only occasional. The Flecainide - I feel - makes the AF less symptomatic. In short it's no longer incapacitating or exhausting and I live a pretty normal life doing what I want, which I couldn't before the ablation - even with Flecainide. I define that as a great success - for me at least - although I can understand people thinking it's not a complete cure as I can't say I'm off drugs or completely free of AF.
I did reduce Propafenone from 300mg x 2 to 150 mg x2 on which I was stable in normal sinus from 63 to 70 b.p.m. for the last four months. I really wanted to be off any anti-arrhythmic drug which is why I was trying to wean myself off Propafenone.
Unfortunately it didn't work and my heart rate has remained high. I consider all three of my ablations successful despite the complexity of my case. Each one contributed to blocking electrical signals.
My heart was badly remodelled from being in persistent for so long coupled with my right superior pulmonary vein having to be ablated two times (after fist ablation) due to reconnection. Even for the third ablation, there was some stubborn electrical signal(s) that was still coming through so I had to be converted back to sinus. Maybe it is this signal coming through now-- I don't know; I'm not knowledgeable enough.
Thank you for your reply; you raise important questions for those still on anti-arrhythmic drugs.
I thinks it’s all down to quality of life.?? Before ablations I had troublesome AFIB felt awful etc. Started on propafonone still got Afib but at reduced frequency and a lot less awful etc.! Had 3 ablations over 3 years still got Afib but a lot easier to live and cope with and a lot less frequently. Use propafonone now as a PIP if I get a episode but so far so good as been in constant NSR for over 6 months+.
May I ask how the "gradually" was done to come off Propafenone? The first time I stopped Propafenone cold turkey I lasted only 6 days. Now, trying a "gradual" method I lasted 12 days as per my post.
This whole relapse I am beginning to believe has a lot to do with how long I was in persistent AF allowing my heart to remodel. In my case it was 6 months before first ablation. How long were you persistent before your first ablation?
We are in a special category. We both have had three ablations. Congratulations, you need only a PIP.
I reduced my propafonone dosage over a month sometimes maybe six weeks after each ablation as instructed. So after a month or so I was propafonone free. I was diagnosed with lone Afib about 6 or 7 years ago if memory serves me rite. Maybe a little longer.? Iv had ectopics and sometimes fast heart rates from being 18 years old though and I’m now 53, but it was never picked up for years and years because as soon I went to A+E and got a ecg everything was normal. Sod’s law isn’t it.!!!
Was your lowest dose before stopping completely then 150mg x 2 because that is the lowest dose except in China where someone stated you could get 50 mg tablets?
Yes 150mg was the last amount, on the last weeks or two I started spacing it out so some days I wasn’t actually having propafonone as the gaps in taking it we’re getting further apart. I have read that some people have just stopped straight away but iv always been told to do it slowly. I suppose different things work for different people.?
Thank you. That is most informative. Cold turkey did not work for me. Taking just one tablet (150mg a day) - which I did for 10 days- then beginning alternate days on 150mg didn't work either. (That was a method an internist doctor offered). This "gap" method would be one to consider if I ever would be able to get off Propafenone. But, I have no confidence I will ever be able to get off anti-arrhythmic drugs whether I am kept on this drug or switched to another one like Flecainide.
I was just thinking the same thing Wilson to be honest. I’m looking at having an ablation this year but after reading this I’m thinking what’s the point if I’ve got to continue taking meds.
See comments on the thread below. Whether you take drugs or not post ablation may be linked to how advanced you AF is, how much your heart has been remodelled, and how difficult your heart is structured for the EP to get all the sources.
Hi elli, because we are all different, some people are drug free after ablations some take a while before they are drug free and some are not drug free. But after 3 PVI ablations im now on a PIP approach where’s as before I was taking propafonone daily along with warfarin. I’m not on warfarin anymore although I never minded taking warfarin anyway to be honest
Oh, I see, Jetcat. You write you have had 3 PVI ablations and not beyond PVI, which is in line with my assumption above that your heart didn't really remodel so much which therefore may be the reason why I, with a very remodelled heart, still have to be on drugs and you don't. For three similar ablations, you must have had some reconnections.
Yes, sorry about that cuore I do apologise. And your rite I did get re connections. I was actually booked in for a fourth ablation but it was more or less cancelled and constantly put back because of the COVID situation. So I’m still waiting to hear from the cardiologist etc to see what’s happening this year.?
Wow! even after a third ablation, you still get reconnections to now consider a fourth ablation. In my case, the right superior pulmonary vein was ablated three times. I now wonder if that is the area that is still acting up.
Sorry, I fail to see what you are sorry about or what you are apologizing about. Everything seems to be fine.
Cuore I can understand your frustration. I think you and I had ablations at around the same time and had similar experiences. I have only had two and I am still on Flecainide. Like you after a really good spell of about 9 months in sinus rhythm, my EP suggested cutting the Flecainide dose in half to 2 x 50 daily. Three weeks later I started getting AF episodes after lunch every day.
To cut a long story short I started taking Flecainide 2x100 daily again and things improved. If I were to try again to stop, I would reduce more slowly starting with 2 x 75 daily or even less if I could tweak it. My husband is doing this under medical guidance with steroid treatment for polymyalgia and his body seems to be fooled.
But like Jean above, I feel pretty good for now and, though I don't like the idea of long term drug use, I think if I can carry on feeling like this, I am tempted to continue with the medication and enjoy life.
Thank you for your concern and uplifting reply. It brought tears to my eyes not because of my condition and what I've been through (the bottom line is I am really very lucky) but because what a kind, thoughtful person you are, and that you had remembered me. I guess my emotions are raw right now, and your words triggered tears of joy.
I researched that the lowest dose of Propafenone here (covering Canada, U.S. and the U.K.) is 150mg. One reply post said 50mg was available in China. I had thought of cutting, but there would not be even distribution in the pill.
I agree that when one is sensitive to certain drugs combined with extensive ablation, the weaning may need to be more than slowly.
Were your everyday episodes of AF all over 100b.p.m.? Yesterday and today most readings have been87 - 100 b.p.m. with the Kardia recording alternatively normal, atrial fibrillation and unclassified. Three readings were tachycardia up to 110 b.p.m. So my heart is doing all sort of different types of dancing.
I have drawn the conclusion that it will have to be at least a year before I ever attempt to stop an anti-arrhythmic drug again, and it that were the course, it would have to be a very programmed weaning. If I must take a pill to remain in sinus, then I will have to accept it.
Except for some physical limitation and occasional breathlessness, I am fine. Nevertheless, I like to push the envelop.
Cuore certainly I remember you and your bold brave journey to France for your treatment🙂. It came at a time when emotions were painful for me too. Your reply today was really very touching because it made me realise that when we reach out out here on this forum it can make a difference however small.
I looked back at the Kardia readings for daily AF episodes from the time I tried to reduce Flecainide and see that they were between 79 -122bpm. Those were just the definite AF readings. Some of the other readings were unclassified so goodness knows what was going on there. To be honest I still get mystery rhythms. Quite a few are unclassified.
You are right about the cutting of the pills. It must make the dose erratic. So weaning super slowly could be a problem. My husband's steroid reduction is easier because the tablets come in a range of doses. If only anti-arrhythmics were designed in the same way.
I do hope you get back on track soon. I don't think all this Covid news helps our hearts very much.
After my second AFIB ablation 10 years ago, I went 10 years without medication pretty much normal sinus.
AFIB returned in AUG of last year. I had my 3rd AFIB/tachycardia ablation (4th ablation overall) on OCT 23rd. I stopped 2 x 50mg Flecainide at Christmas with no abnormal arrhythmia yet.
Hi theday after my second ablation on 18 November last year I went from 5 Mg of bisoprolol and 200 Mg of flecainide a day to none
.I have been in NSR since then. But my resting heart rate has risen from 55-60 bpm to 75-80 and until recently I would have ( mildly noticeable) ectopics about 1 per minute.
My EP told me that he thought he had found all the sites to ablate so I needed no meds other than anticoagulant , and he said it was likely my rate would slow to around 70 with reduced ectopics, so far he has been right
60yr old male moderately fit but no athlete who has a glass or two of wine most evenings
I was a most complicated case and had to be cardioverted to sinus, so probably not all the signals got ablated. I forgot to ask the Bordeaux EP the question and now I am back home.
Monday I will see what my local EP (who did not do the ablation )says during the phone consultation. For the last six days, my heart has not gone below 84 b.p.m. I have looked at my one lead Kardia tracings and do wonder if some are ectopics. Something is fefinitely going on.
Loved the wine part. I drink only socially which is rare now due to Covid. It was not more than one glass always accompanied with water. It was never a trigger, but sweets have been.
I should have kept track of my own question that you are on no anti-arrhythmic drugs after your second ablation compared to me who after three ablations still can't get off them.
Yes that is correct, and my EP was very clear he was certain he had “ nailed-it” on the second go. It may be relevant but my ablation number two was with brand new ( very accurate they say) mapping of the heart .
In my evaluation, before the mapping, the credit goes to the condition of your heart which had not got to the persistent stage, or if persistent probably not more than two months.
I had the most advanced mapping - both the cardio-insight vest and the Rhythmia method, but my heart was a totally remodelled six month persistent one. I will also add that my EP was world-known.
Henceforth, I do try to alert afibbers the dangers of reaching the persistent stage. It is unfortunate that there are thousands of GPs who are so ill-informed that they let their patients slide into persistent without a referral to an EP who could have performed an ablation at an early stage with the hopeful result that the patient would be then drug-free. That is what happened to me, and I am the one paying the price for my GP's error. GPs have no business trying to act EPs. They simply should refer.
sorry if my previous mail was irritating I had no idea what detail you had been through.I totally agree that after the second episode of af all patients should be referred to an EP because it seems clear that early action is the most effective
Oh dear. There is nothing to be sorry about and I did not take your mail to be irritating at all.
I took it as an opportunity to expound my theory to get to an EP as soon as possible before a GP just lets the AF condition worsen by incorrect treatment. GPs have no business acting as EPs. I simply tried to have that resonate to those caught in a similar predicament.
I apologize to you if I came on too strongly because my comments were made in general, not to you specifically. Furthermore, I do thank you for being part of this post because I feel drugs after ablation or not is a worthy topic to be explored.
I was under the impression that one of the main reasons for ablation was to rid the need for medication? I’m due one shortly and it was sold to me on that basis. I’m 38 and asymptomatic but the drugs I take don’t have a very positive effect on me.
I had an ablation 3 years two months ago. I was asymptomatic in AFib and very high rates up to 195 resting and higher when running, but I did not get on with many drugs. I wanted off the drugs and all the faffing about with high rate afib attacks.
I have not taken any drugs except a few Paracetomol since May 15th 2018.
Your statement is correct, in my opinion. In my case, my heart was so badly remodelled that I had to have three ablations resulting in extensive ablations having to be cardioverted back to sinus for the third ablation. Due to my advanced condition, the EP probably could not get all the sources. I don't know.
With your younger heart by forty years, and with your hopefully being paroxysmal, your outcome should be one where you will be drug free, especially since "it was sold to me on that basis." Your EP had evaluated the situation. Let me prematurely say congratulations on being drug free. You are too young to be on drugs for the rest of your life.
I am 69. I had my first ablation at 58. Lasted a few years. My EP was at Vanderbilt University Hospital. He told me at that time he wouldn’t do it for me a again. 5 years More drs were doing them, EPS, two more ablutions at 63 and 64. Didn’t work, I am in permanent a fib and a flutter. Mostly a flutter. Also just found I am in mild HF. I wish when I was having tachycardia in my late 20s they would have known about ablutions because my electrical issues were so new. When I went into having so many pvcs and tachycardia they could have done one, then at 58 I had my first bout of a-fib. I feel by the time I got my first ablation, my heart was damaged from all the episodes over the years. Now I am on 200 mgs daily of metoprolol with HBP meds keeps it under 100 most of the time. Usually HR is in 70. Just don’t wait to long. Now that everything has came so far in medicine things should work better especially if you are just beginning
It was 1994 when Dr. Haissaguerre and his colleagues in Bordeaux, France (actually at Haute Laveque Hospital in Pessac, France) first developed the ablation technique used all over the world today. Today, LIRYC (you might want to Google it) , the international institute Dr. Haisaguerre went on to build, is specifically focused on solving arrhythmia diseases. The field of electrophysiology is continuing to break grounds. It might be worth a consultation there to see if anything can still be done for you.
My calculations place you in 1982 at 30 years old which was in a time period pre-electrophysiology treatment. Your third ablation seems to be in 2016 where treatment had become sufficiently advanced, so like myself, you must have had extensive ablation.
The whole point of my post is, as you say, "Just don’t wait to(sic) long." It appears that for those who "wait too long," they may still have to be on anti-arrhythmic drugs despite ablations. I have drawn that conclusion for myself.
My "waiting too long" was caused ,first by my GP who waited until I was persistent to refer me, and then by the cardiology department at the hospital ( Vancouver General Hospital ) plus the B.C. medical system that greatly contributed to my "waiting too long" causing my heart to be extensively remodelled. Three ablations at Pessac, France later, my AF has returned. I triggered it by trying to stop Propafenone.
I was first diagnosed on Feb.2, 2016. Five years later, I am still continuing this battle in a war that I will not win, but a war I will keep on fighting. What pleases me is that the current trials confirm a rhythm control strategy is best ( which will take the treatment for AF out of the hands of GPs who hoard patients, not referring them), and that, with advancements such as the current Pulsed Field Ablation trials, the treatment will be safer, expedient, and more lasting. For us old-timer, it is too late, but we can spread the word to get properly treated early. So pleased that you are on board with that thought. With current solutions, there is no reason for anyone to become persistent, the time period where the heart really gets remodelled.
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