my GP allowed me to increase my dose to 300mg a day after my experiment with amounts
Since then I have improved my breathing no end I still get it but not every time I do any minor daily’s jobs
my quality of life has improved this last 8 days I just hope it lasts
anyone find that AF eventually gets the better of the higher dose ?
Hi NLGA,
I’ve just read your last three posts to try and get up to speed with what’s been happening to you lately and can see you’ve still really been struggling with your breathing. Please can I check, are you persistently in AF or has the fleconaide returned you to rhythm? It’s good that your breathing has improved though, so am wondering if you are in rhythm?
If however, you are constantly in AF and you have been on flec for sometime, is it at all possible to try and speak to an arrythmia Nurse at your local hospital for some advice? I’m sure you know 300 mg per day is the max, for anyone to take. I’m sure your GP is trying to help, but I’m not sure if they are the best person to advise on fleconaide as it is usually a cardiologist ( or their Arrythmia Nurse) who would change your dose of fleconaide ideally.
If you are constantly in AF albeit at a lower rate, what I’m trying to say is, the fleconaide doesn’t appear to be working for you. It’s an anti Arrythmic and it supposed to return you and help keep you in sinus rhythm. If you are taking 300 mg a day and you are in constant Afib, I think, personally, you really need the advice of someone more qualified than your GP.
Hi Teresa
I am not always AF and the last week I haven’t been once but I can be for 3-4 days on the previous 100mg Flecainde dose . I have been breathless soon as I do any chores for 2 years now to this week
I did go for cardioversion but I wasn’t in AF unfortunately .
My next cardio appointment is in December but so far no booking
Hi NGLA,
Ah, I see. It’s good that you are feeling better and that you aren’t always in AF. I really hope your rhythm stays for longer now you are on this highest dose, but I’d really, really try and speak to someone in Cardiology if you can, to see if you can bring forward your appointment? If you do go back into AF soon, please consider that the flec may not be the solution for you long term. I think you need advice going forward regarding flec, because I’m not sure if 300 per day, every day is for long term.
They will need to explore why you are breathless and I think you will have to be firm with them about it as it’s gone on too long.
I would call them about your booking too….as you haven’t heard. Unfortunately I think you will have to instigate it and chase, if my experience of my local hospital is anything to go by.
I agree Teresa
Last appointment they cancelled and pushed it back 6 months I had to go to PALS again to moan . I have read that 300mg is the highest dose that’s safe
I have a echo in December but I won’t get much help there with my questions the last time the nurse had only a enough English to get by and couldn’t give me any answers to general questions
But we will see
I had a 24 hour tape 10 days ago so I imagine I will be able to chase for them results towards the end of December as they didn’t share them with my GP last time
Oh dear, they haven’t been great have they? I can see why you’ve taken matters into your own hands. At least you know you should be having an echo at your next appointment, believe me, that is progress (I’ve only had one, over two years ago).
I just hope your appointment comes through - though I’d seriously consider chasing it if I were you? Post from our hospital, which is 5 mins away by car, takes a week from the date it’s written for them to post, and another week to arrive 😳
Good luck and I hope you get answers soon.
Hiya NLGA.
I tend to agree with Teresa. Whatever you do DON'T increase your dose without talking to your cardio or EP first. 300 mg is the max per 24 hours. If you do you'll end up in flutter.
I am not a doctor. Talk to your medic please.
Paul
Hi Paul
So far no flutter no gasping for oxygen
I totally agree it’s a max dose
As mentioned you are on max dose Flec. So no more flexibility there. I would have a full discussion with your trusted cardiologist as to what your future options are; always best to prepare for what might be necessary.
Hi NLGA. I’m wondering if you have a problem with your mitral valve, that can affect your breathing. Like you I am also on flecanide but 200mg a day. I’m a persistent Afib and after a stroke during ablation period, a cardioversion only works for me. I had a new mitral valve in January and it has helped my breathing. Might be an idea to talk to your cardiologist.
Hi Sally
I had a echo in June 21 the mitral valve had a mild regurgitation I asked the cardio dic and he said that’s common at my age mid 50’s
I did have a low normal ejection fraction which he said some walking at pace or general fitness would help with , not so easy when you can just about get upstairs without heavy breathing
I have another echo on December as I pushed for it mainly due to thinking that it’s only one persons view so far
I’m a 79 year old female and 100 mg of Flecainide taken twice a day has virtually put an end to my AF episodes but we are all different and it does seem to have increased my fatigue so I rest much of the time!
That’s good
Was you breathless before at all with your AF
It’s that that hot me down I was told by the cardio doctor I had tachycardia plus the electrics from one source feeding blood into my heart was not beating in time with the others and then confusing the others so my heart held to much blood at times making my breathing poor
But I have no real understanding of all this
No, no breathlessness. I have a Kardia (and smartphone) as a result of visiting a private EP after the lowest dose of Bisoprolol proved too much for me to take daily. He didn’t believe I had it as I am not overweight etc but after I’d acquired the Kardia and app on my smartphone and sent him a reading of an episode, he sent the prescription for Flecainide to my surgery. First I just took it as PIP when I had an episode but later as they increased I took 50mg twice daily and now 100mg twice daily. A few days ago I forgot my morning one but heart behaved anyway! At the time I must have been infected with covid I did get an episode but an extra pill ended it in a few hours and I hadn’t exceeded the maximum dose! Of course we are all different but do hope you find what works for you. Wouldn’t something like Bisoprolol help with the tachycardia? And a Kardia is a very helpful companion as many of us here have found.
Yes I have Bisoprolol 10mg a day ( well I take them before bed ) He said that’s for the the rate
I was in hospital twice took 4 days to drop under 130 ish I had a 6 day and 4 day stay in the ward
Gosh! That just shows how different we all are! 1.25 brought my heart rate down too low!!
I was on 5mg but no luck it was still flying so I went to 15 now I can manage 10 ok
They haven’t really explained if once the electrics are controlled with the flecainde if the speed with improve or if I can drop the beta blocker dose
NLGA,
I might have asked you this before, but did you have breathing problems before you started taking Bisoprolol? Bisoprolol can cause breathing problems, especially in people with asthma as it’s contraindicated.
Hi Teresa
Totally understand why you asked that as I have read about issues with it
December 2021 I noticed I was breathing heavy doing basic task my longer walks got less fun
I went to my GP February 2022 to be told my asthma was the issue I didn’t believe this but went with it
I asked for more test so in May I went for a EGB at the doctors my pulse was 172 that day I was sent to A and E and that’s the first time I was out on Bisoprolol
That’s interesting…..so the Bisoprolol can’t be the problem, though, if you have asthma, bisoprolol isn’t the best medication to be taking with it, as it is very likely to make any existing breathing problems worse. I would definitely look further into the possible mitral valve issue that another person has suggested.
Got a echo in December but it was normal June 21
Spoke a few times to the cardio doctor and he said the hearts fine it’s the AF electrics tachycardia issue that’s making me so breathless
To be honest my breathing was worse before the Bisoprolol
It can’t be the AF electrics tachycardia making you breathless, if you are breathless when you aren’t having palpitations or Afib. I do hope you get to the bottom of the mystery.
The cardio doctor said the electrics are confusing the 4 entry points ending up with the wrong amount of blood going into the heart which has a knock in effect . I remember a nurse saying in A and E my lungs had to much fluid due to what the heart pumped I took it that it may be blood ?
I have had a x Ray on my lungs / arteries via ct scan / plus a previous echo and two X-rays on the heart
So it’s a puzzle from no real issues to this coming on over a couple of months or so
I wonder if you or anyone else knows how the Flecainide deals with the intermittent electrical fault.
Titrating down from Amiodarone
Pulsed Field Ablation in Australia
Permanent AF
Fast AF
