This is an update to my response to Orchardworker’s post 10 days ago.
First a reminder of my background.
I am a 65 year male and I was diagnosed with PAF in September 2014 although I probably had it for some years before that. At its peak I was having 3 episodes a week lasting up to 20 hours each.
I was initially prescribed with 100mg Flecainide and things got worse so the dose was increased to 200mg per day and 1.25mg of bisoprolol added. Things then began to settle down but episodes continued. I also take 20mg of Rivaroxaban daily.
I started taking 300mg of Magnesium Citrate in October 2014, which I later increased to 450mg per day, and I also introduced big changes in my diet and lifestyle (the positive impact of AF!).
Apart from the usual ‘rabbits kicking around inside my chest’ during an episode, I had no other physical symptoms. However, the day following an episode I usually felt completely drained and I had to be very careful what I did as my concentration was affected. I got a bit depressed at times especially when my pilots medical was suspended for 6 months but things are back to normal now. I have no obvious side effects from the drugs but I now suffer from bradycardia (a 24hr monitor in July measured a low of 34bpm during sleep).
I had a routine review with my cardiologist this week and, as my last episode was in March, I asked him if I could reduce or stop the flecainide and bisoprolol. His response surprised me as he was very firmly against any change. He feared that any reduction in the dose might not only provoke AF to re-start but it may also then become persistent, in which case he felt it would be much harder to treat. I pressed the point but he was not prepared to concede at all. I will accept this advice (for now at least) but I will raise the point again in the future, assuming my progress continues.
At this stage others will be reaching for their keyboards to advise me that the only way to avoid taking drugs for the rest of my life is to have an ablation – please don’t bother. In the absence of any episodes or symptoms I see no need for an invasive procedure at this stage but I am prepared to re-consider if circumstances change.
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Craggy
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Hi I have AFib parts of most days. I was on bisprolol and had a heart rate in my 30s at rest. My cardiologist wasn't concerned but when I was switched to an EP she IMMEDIATELY took me off it. I went on Tikosyn which has more long term side effe c ts but doesn't slow down the heart rate. I am about to have a pacemaker pUT in so I could go on flecainide. When jy heart rate went up and I got off of bispro lol I immediately had more energy. And my EP says my energy will go up again with a more normal heart rate.
Thank you for such an interesting post. I do think that you have no alternative other than following your Cardiologist's advice.
I wonder if any work has been done on the long term use of flecainide ?
I am on 2.5 bisoprolol which reduces my rate from 80 to 65. I did try 1.25 and it didn't seem to alter so I continued with the 2.5 tablets and will be on them indefinitely. They don't bother me but something has given me numb feet. Relim is similarily afflicted and she blames flecainide.
Good point. There is always hope for new developments. It's clear that ablation procedures have improved enormously in recent years. There is plenty of scope for new developments to just get taken up more, such as the 3D mapping and robot operation.
I read that, although there isn't much in the way of new drugs coming for AF, one company is looking something at involving spider's venom.
And there's always hope for something from stem cell research.
Yes when I had my first ablation in March most of it was done using the Hansen robot with just a small amount done with the GP at my groin moving the catheter. My was done using the older (5 years or so!!!) mapping machines but since then I believe 6 to 10 of the new 3D mapping ones have been installed but I don't know if all working!!!!
One thing that the EPs have been doing is tweaking existing drugs to get better results and engaging in trials.
Very interesting article. I took Flecainide for about 20 years with no drastic side effects. I did get some numbness in my feet in the later years when the dose was increased to 2x100. However, I am delighted to have been off it for the past 5 months following a successful ablation.
20 years! That's really encouraging. Sounds like for most of the time you were on 50, which is I think the minimum basic dose. That's a really good run - presumably you were AF free until the end?
Yes - I was on 2x50 for most of the time then up to 2x100 and for the last few years also an extra 100 as PIP whenever AF struck. I had paroxysmal AF with the episodes getting ever more frequent until I had to resort to ablation, couldn't take the risk of it becoming persistent.
Thanks very much for the further info. As I seem to be lined up for Flec, it's good to hear of someone who has had a good, long term experience with it. I'm 53, so can't help but be worried about finding a solution that will last me 30 years (with a bit of luck). An early ablation would be the alternative, but we'll have to see what the EP says.
You may not be on it for long. I was only on it two months and then after only being in NSR for 24 hours after a cardioversion my EP said no point in taking flecainide as it was having no or little effect. That was before I had actually decoded on an ablation but this was at the consultation when EP said only realistic option was an ablation.
Hi - Thanks for the reply. Things have moved on, as I had a private appointment with an EP (it seemed like fate that when I rang up there was an appointment really soon and he's a specialist in AF). We agreed I should go straight for an ablation (on NHS, I would have to change to his hospital which is good but further away than my current one). I am not sure if they will put me on any rhythm drugs at the same time or after. Feel nervous but positive at the moment! As people keep saying, it can be a long, rocky road.
One of the reasons I often say in posts is to get referred to an EP first by GP is that relatively few hospitals have EPs whereas all hospitals with A&E have to have at least one cardiologist, usually more. Obviously some other hospitals also have cardiologist(s). That way if the tests done by EP pick up other issues for a general cardiologist or a specialist cardiologist (eg valve specialist) then EP can refer the person to that specialist at same hospital which will save multiple tests and make communications between different consultants easier and more effective. That reason is obviously in addition to the key one that an EP is the real specialist or guru of electrical signals and arithmyia. I know that this doesn't help you but hopefully it will others.
Hi compared with many i seem to be on quite a limited cocktail of pills , thank goodness.
No flec but was put back on a small dose , 1.25, of the bisoprolol which seemed strange as I normally have a low resting HR and ain hop0ital after the last Cardioversion was told I had dropped overnight for a short time to mid thirties which seemed to cause little concern . i asked about the blocker checking the rate and not having a rythnm control drug. but and was told it wold help keep the AF at bay . I suppose I should be thankful I am not on the Flec it does not sound to good to be talking that often. I seem to be coping on a nightly dose of the biso .
Firstly is your cardiologist an EP? If not I would insist on being referred to an EP to get a baseline established now. That is very important for the future and is your right (see care leaflet for England). It doesn't matter at all that you have no intention of having an ablation now. Also an EP is specialised so as they seeing and dealing with only arithmyias and are better placed to assess and, if necessary vary, medicines.
Secondly as I understand it all the flecainide is doing is stopping the atria from fibrillation as it does nothing to stop the rogue cells from generating and transmitting the signals and new pathways can continue to be generated. As we all know AF is a mongrel affliction that affects each of us very differently.
My cardiologist offered to refer me to an EP but I declined (for now anyway). If you are not careful things can start to generate their own momentum. I was keen to try my own lifestyle changes first.
Interesting question - is the flecainide responsible for my improvement or was it the actions that I have taken? Perhaps a mix of both.
Your second paragraph is very interesting although I don't quite understand why, if electrical signals are transmitted and travel along pathways they don't cause any AF type symptoms. I will research this further, what was the source of your information?
I don't remember now and my PC packed up last week so don't have access to articles, etc, that I stored. It may well have been a medical one. It struck a chord because I qualified as an electrical power and control engineer so understand a lot about signals, interference, etc in the general world so to speak.
I would go back to cardiologist and get that referral if I were you. That way you can get a baseline set. Then EP can see improvements due to lifestyle changes and rebaseline. Also if you then get problems in the future you are already on the books so to speak and all base lining is done which could easily save 6 months or more. Even if EP did suggest an ablation (and they by no means offer all their patients one) you can always say no. In my case EP told me at third or fourth time that realistically there was no other option than having an ablation but would not accept an answer there and then and told me to go away and think about it for a week and. Then let him know my decision. This was even though he knew that I had done a lot of research including AFA website. He took me off flecainide at that point because he said it was having minimal effect and therefore no good reason to subject my body to it. I am in long term persistent AF.
I speak from experience and I wish I had gone sooner and started the whole process off when things were at a much more minor stage. In my case that would have saved at least 9 months, realistically 1 year.
Thanks. If I was also in persistent AF then I think my approach would be different. As you said previously, we are all affected differently. That is why I just relate my own experiences so others can cherry pick the information they find useful.
it may be a mix , but if you drop the Flec dosage you will find out as I did and was v quickly back to having episodes upped the dosage and they were gone. BTW dont reduce the dosage without advice.
I could not agree any more Peter. I wish this advice had been available to myself five years ago. Even though I was under a cardiologist, there was never a recommendation that I should see an EP. I didn't even know that an EP existed. On a regular visit to see the cardiologist in September ( I saw a different doctor ), I was immediately referred to an EP. Come December the 1st I was in Barts, having an ablation.
Well I was lucky that I had an enlightened GP. I had been picked up as being (persistent) AF during an eye operation and then she was the one who said about going straight to an EP. I would have been none the wiser if she had sent me to a cardiologist. I think that the trouble with some cardiologists is that they regard EPs as the new kids on the block as they have not been around as long nor are there as many EPs.
Was the cardiologist at Barts or not? I am under Dr Earley at Barts.
A few points Craggy in case it helps, as we seem to have similar AF occurrences and a similar approach to deal with it:
You don't say what your regular pulse was before drugs, mine was always around 60 with 120/70 BP and after going on just Flecainide the pulse dropped 5 points, BP unchanged. As I was 60 then (almost 2 yrs ago) with Lone AF my cardiologist didn't put me on anything else as he said it would lower my BP/pulse too much. The experts here know about bisoprolol but I would check whether that can be dropped first.
Next re the Mg supplement, that may need to be balanced with 100mg/day Lamberts CoQ10 after checking its not going to contraindicate with the Rivaroxaban. My Naturopath put me on Mg & CoQ10 as Mg relaxes and CoQ10 strengthens the heart - maybe your pulse is dropping because the Mg is relaxing it too much. In the early days, the Mg supplement at night used to virtually knock me out, now less so.
In the first year of Flecainide, I had tired days but after 20 months these seem to have gone. Incidentally, I used to get odd days when I would be peeing every 10 mins or so (usually in the afternoon), which somebody here pointed out is the heart giving off the AF enzyme but AF itself is stopped with the Flec. That's stopped too.
As you know from previous posts, I have addressed every lifestyle change man has ever thought of! I think this has helped. Currently, I feel fine but my cardiologist still wants me to stay on the 200mg/day Flecainide, whilst giving me the OK to reduce to 150mg with the warning AF may restart. My view now is that I will stay on Flec for another 3 months making 2 years ( as advised from personal experience by a cardiologist speaker privately at the 2014 AF conference) and if everything good at that point go down to 150mg/day.
I don't share others enthusiasm for EP's advice or ablations and plan to postpone both.
interesting that reflects some of my experience - have been on 100-150 a day Flec for 5 years with very few AF episodes - my resting pulse is about 50 - I have to up the Flec if I am ill in any way but this usually works - my Cardiologist refers to this as a small dosage and has advised me to keep on this course to see if there is a more certain outcome from ablations or some other development. I do not find the Flec difficult to tolerate.
Thanks. Pre-medication, my pulse and BP figures were very similar to yours (maybe a shade higher).
Your comments about the magnesium supplement are interesting. Following a talk with a nutritionist earlier today I plan to explore 'plant derived minerals' and Selenium.
Please keep us updated, in due course, with the outcome of you reducing your Flecainide dose.
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