Anyone on flecainide?

I am 69, I have fast paroxysmal atrial fibrillation, I was prescribed flecainide after a visit to a&e, to be taken as pill in the pocket, I used it 3 times over a couple of years, I then saw a private cardiologist at the Bristol heart institute, he took me off of it immediately as I have mild aortic stenosis, he said it could have killed me, I take bisoprolol now and have to double my daily dose if I get an episode.

I have Flecainide as a pill in the pocket. I have a form of SVT and had one, very bad episode of PAF. My cardiologist offered me it on a regular basis at first but agreed to the pill in pocket eventually. It all seems well controlled by calcium channel blockers but is triggered by infection and over heating.

Indeed I would!

I was on Rivaroxaban but have been changed to edoxaban - I think because it is cheaper, but I am fine with that if it saves the NHS money.

Sarnia

Luckygirl3

On my second bout of AF in a week - which is unusual.

Saw GP last week when it started and he did little, but changed my anti-coagulant. He did not even take an ECG.

I have to see him again today as I am back in AF, but also about some other problems. On the phone just now he said he might put me on flecainide. When I was last at the hospital with this I was told that this is not suitable and not used any more for my problem.

Hmmmm ...... bit difficult.

I will be interested in the replies to your post. I have had PAF for over 30 years so in that time I have had a cocktail of different cardiac drugs. Flecainide was one of them. It suited me because it is not a beta blocker, so does not lower my naturally slow heartbeat. When my 70th birthday was coming up the cardiologist took me off Flecainide due to my age. I am a member of the Health Unlocked forum and several people older than me are on this drug with no effects. Many sufferers have them as a PIP (pill in pocket) so they are not taken daily, just when an episode is happening. Can I ask what he changed your anti-coagulant to? If it has been changed from Aspirin to one of the newer drugs then fine. They are much better and don't have the side effect of abdominal bleeding. Anti-coagulants are vital for PAF/AF sufferers due to our increased risk of a strike. Good luck and get answers to your questions.

Stroke not strike. Like me I expect you would be delighted for AF to go on strike!

Luckygirl3

On my second bout of AF in a week - which is unusual.

Saw GP last week when it started and he did little, but changed my anti-coagulant. He did not even take an ECG.

I have to see him again today as I am back in AF, but also about some other problems. On the phone just now he said he might put me on flecainide. When I was last at the hospital with this I was told that this is not suitable and not used any more for my problem.

Hmmmm ...... bit difficult.

I will be interested in the replies to your post. I have had PAF for over 30 years so in that time I have had a cocktail of different cardiac drugs. Flecainide was one of them. It suited me because it is not a beta blocker, so does not lower my naturally slow heartbeat. When my 70th birthday was coming up the cardiologist took me off Flecainide due to my age. I am a member of the Health Unlocked forum and several people older than me are on this drug with no effects. Many sufferers have them as a PIP (pill in pocket) so they are not taken daily, just when an episode is happening. Can I ask what he changed your anti-coagulant to? If it has been changed from Aspirin to one of the newer drugs then fine. They are much better and don't have the side effect of abdominal bleeding. Anti-coagulants are vital for PAF/AF sufferers due to our increased risk of a strike. Good luck and get answers to your questions.

Lucky, my mum had AF that occasionally went into palpitations. Scary. So far I’m just easily tired, find hill walking no longer enjoyable and best avoided. My BP is low and my cardiologist discharged me in December. He said the update echocardiogram was good, my pulse rate irregular but acceptable no need to change meds, to be re-ref by my GP if necessary. The only down side for me was will I ever see a gp again

I am glad that you have found a regime that suits you.
I find it quite hard as when I am in AF it is very fast and I am out of breath and light-headed - and I have trouble sleeping as lying down makes it worse. I hope very much to find some way of managing this that does not impinge on my daily life so much. I guess that I have to be patient and see if I get used to the drugs. At the moment I can't get it at all as no local chemists have it!

It is very trying to be feeling so lethargic when there is so much I want to be doing! I am going to Dorset with my family later today and am quite concerned not to be a party pooper!

I’ve been in permanent AF for 9 years now. A cardio version 9 months in put it right but within 3 months I was back in permanent AF. My consultant said 50% revert. We discussed ablation but he felt the risks outweighed the possible benefits at this stage. I’m lucky, I rarely qget palpitations and have a low heart rate
I take apixiban and Viazem and get on with it. Every year seems to bring another thing to manage.

DH has AF and was put on Endoxoban with Flecanide as an emergency 'rescue' treatment. He has also been on Bisoprolol and Simvastatin for over 30 years. He seems quite stable on that but freezing cold hands!

After several bouts of AF in the last week I have just seen cardiologist privately. He thinks my leaky mitral valve has got worse and might account for the current problems - having another echocardiogram and he is changing my meds to something he hopes will be a bit more effective in keeping it at bay. My bank balance is going to look a bit sick - but I do need to sort this out. Health or holidays I guess........

Good the ablation worked. I have a scan watch on which I can take an ECG. It is very useful for telling me when the rate gets so high that I need to seek help. I don't need it to tell me I am in AF ... it is very obvious!

I had a cardiac ablation in Monaco in 2012 and have been in very good health since. Atrial fibrillation was hideous and made me feel the worst I have ever felt. In the middle of an attack I could do nothing but lie down and feel like I was about to die. I take apixaban twice a day and also havebeen prescribed flecanaide as a 'pill in the pocket' just to take during an attack not all the time as its very strong medication - but these have been extremely rare since the ablation - probably less than 5 times since. I rely totally on my 'Kardia' machine which takes a 30 second ecg with results on my iPhone if I ever feel 'fluttery' and want to check whether or not it is A Fibs. This is the size of half a credit card and costs about £99.

I have just reverted to normal sinus rhythm! I am so hoping it will stay!!!

I hope you have a positive outcome from your appointment Luckygirl3 and that you’re soon feeling much better.

I have just made an appointment to see a cardiologist privately next Thursday - I don't smoke, drink, take expensive holidays so I might as well invest in my health. I hope this will not entail too much additional cost. I am hoping so much that they will be able to improve my quality of life. Fingers crossed.

Whiff

Luckygirl the nurse at the AF clinic put me on Flecainide as it didn't interfere with any of my other tablets had not side effects from taking it . They also put me on Apixaban just have to be careful not to cut myself and can't eat anything crunchy as I get blood blisters in my mouth if I do. So biscuits are dunked and crusty bread or toast broke up in my soup or covered in baked beans. But better than risk a stroke.

I was born a small hole in the side of heart found out in 2020 and confirmed the position in 2021 few months after attending AF clinic as they finally caught me in AF when on the ECG machine I have Paroxysmal atrial fibrillation.

I miss heart beats but the MRI found the connections between the chambers of my heart intact and I have a strong heart function. I do get breathless at times but told by cardiologist and AF nurses as long as I don't get chest pains then I will be ok. The hole is small and safer to leave at the moment. I do get heart flutters and PAF every now and then but I don't worry and it's over in a couple of minutes.

When the cardiologist told me about the hole I laughed as I have had 2 minor operations and 3 major all with a dicky I will be 66 next month. My brother has permanent AF and 2 stents in his heart. On different heart medication to me.

I too have a small VSD (hole) mine was picked up when I was 3. These days easliy fixed non surgically.
Causes tissue issues. I have PAF plus I ended up with Heart block so have a Pacemaker as well.
Knowing all about this "hole" since I was little put me on the pathway to become a Cardiac Physiologist in the NHS and still am, sometimes not a good thing being in the know though?
I have only in the last 3 years has these issues fine before.

Thank you for the helpful replies.

I am not sure what to do, but may try and arrange a private cardiology appointment to speed things up. This AF is having a big impact on my life - I have just had a shower and I am wiped out completely. It is very trying.

Unfortunately I have had side effects from some of the offered drugs.

I was given this drug along with apixaban and bisoprolol for AF, thankful they work for me and I've had no further episodes. Been on them since having covid when the AF started, previously I only took paracetamol for joint pain.

Luckygirl the nurse at the AF clinic put me on Flecainide as it didn't interfere with any of my other tablets had not side effects from taking it . They also put me on Apixaban just have to be careful not to cut myself and can't eat anything crunchy as I get blood blisters in my mouth if I do. So biscuits are dunked and crusty bread or toast broke up in my soup or covered in baked beans. But better than risk a stroke.

I was born a small hole in the side of heart found out in 2020 and confirmed the position in 2021 few months after attending AF clinic as they finally caught me in AF when on the ECG machine I have Paroxysmal atrial fibrillation.

I miss heart beats but the MRI found the connections between the chambers of my heart intact and I have a strong heart function. I do get breathless at times but told by cardiologist and AF nurses as long as I don't get chest pains then I will be ok. The hole is small and safer to leave at the moment. I do get heart flutters and PAF every now and then but I don't worry and it's over in a couple of minutes.

When the cardiologist told me about the hole I laughed as I have had 2 minor operations and 3 major all with a dicky I will be 66 next month. My brother has permanent AF and 2 stents in his heart. On different heart medication to me.

Has anyone suggested a Cardioversion? I have had x3 now for fast AF only had x3 fast events in 3 years but It knocks me out everytime. I go into Fast AF the rate is so fast very debilitating for me.
My Consultant has told me, Flecinide not the plan atm... But I might go down the Cardiac Ablation route in the future, saw another Cardiologist who said leave until it happens again then we can have a good think about it.
Have you got a Hospital Cardiac Arrhythmia Nurse you can speak to? Mine just an email away thankfully.

Luckygirl3 is there any possibility of seeing another doctor in the practice? You attended with cardiac symptoms and he didn’t even check your pulse and blood pressure. I’d describe that as negligent rather than laid back. I hope you feel better soon.

Just seen my GP - he is very laid back. I think the joke about being so laid back that he is horizontal probably applies ....! He did not even take my pulse! I am still in AF, but he had nothing to suggest. He is referring me to the cardiologist but says it might be months - at this rate I will still be in AF by the time the appointment arrives! Sigh.

I do have a beta blocker already (propranolol) and he says to just take more of that .....

I do find it hard dealing with this on my own - my late OH was a doctor and it was reassuring to have him there. Sometimes it makes me quite giddy and I have no desire to fall over here at home on my own.

I have been on flecainide for about six years now and if I have had any episodes I have hardly noticed them. My GP was quite happy at my last review but I will ask him about it next time as he can be a bit vague. When I asked for an alternative to warfarin he did admit he should have done it years ago! What do you take for AF Luckygirl? I had to come off bisoproril(sp) as it didn’t work with flecainide for me.

Luckygirl3

On my second bout of AF in a week - which is unusual.

Saw GP last week when it started and he did little, but changed my anti-coagulant. He did not even take an ECG.

I have to see him again today as I am back in AF, but also about some other problems. On the phone just now he said he might put me on flecainide. When I was last at the hospital with this I was told that this is not suitable and not used any more for my problem.

Hmmmm ...... bit difficult.

Would also question the use of Flecainide, referring to what the hospital said.

My consultant , I have Paroxysmal AF, changed me on to Flecainide, other drug wasn't compatible as I also have asthma. I've been on flecainide now for about 2 years, only had a couple of small episodes, so suits me.
I do hope you get some answers, and the right treatment as this is one of the most frightening things you can experience and fully empathise with you.