worsening af

[Frootbat]

Saw an excellent cardiologist today. Good listener and didn’t feel rushed. Offered me flecainide and to put me on list for ablation. Said it looked from my mri of last year that Flecainide would be ok. Obviously he gave me the worst case scenario re both treatment. Tne plan is to try the drug and go for the ablation if feels necessary. Any experiences to share? Well a lot I’m sure 😁

[Hidden]

All sounds good, when my cardioversion started to fail, I was put on a low daily maintenance dose whilst waiting for my first ablation. It worked well for me so hopefully you should be fine…..

[Frootbat in reply to Hidden]

Thank you

[CDreamer]

I tried Flecainide 2008-2012. First as a PIP and then daily. Not a nice drug and did some harm but I sort of tolerated it, until AF broke through and got a lot worse. 2 ablations followed, 1st made things a lot worse and 2nd helped for about 3 years, AF then returned.

Unfortunately we never really know how we are going to react or how effective a treatment will be until we try. Judging from this forum it is my perception that men seem to tolerate these drugs better than women. Presumably you will have FBC, Liver & kidney bloods before you start and will continue to be monitored every six months or so after starting? If not ask what protocol is recommended.

Everyone reacts very differently. My first dose of Flecainide was under medical supervision as it can, like anything that helps stop also cause arrhythmias. Not everyone seems to have this type of monitoring.

[Tamgirl in reply to CDreamer]

In what way did your first ablation makes things worse? I am having my first at the end of next week and have been feeling good had 6 months AF free since my last 18 hour episode. Would hate the ablation to make it worse!

[CDreamer in reply to Tamgirl]

Hopefully it won’t, it was an unusual reaction but there’s always one! My arrythmias got a lot worse + autonomic Dysfunction so had a second ablation a few weeks later. That then also caused complications from the drugs but helped AF for a few years.

None of us know how we will react and respond and you need to have confidence in the clinic and team.

As a matter of interest - if you haven’t had an episode for 6 months and feeling good, what is prompting you to have the ablation? My episodes were 36-72 hours 2 or 3 times a week so I was hardly out of AF. That was in 2013/14. What do you attribute your feeling well?

Hope yours does go well and wishing you long lasting NSR.

[Tamgirl in reply to CDreamer]

Thanks for your reply. At the end of last year and the beginning of this, I had a number of episodes. My episodes last from between 10 -18 hours and I am highly symptomatic - v fast heart rate and irregular beats - so very unpleasant. It was therefore suggested by my EP that I go on the list for an ablation and the appointment came up for October. I did query the necessity with an Arrhythmia nurse a few weeks ago but he said I should probably still go ahead as that is the pattern with PAF. I will still query the necessity at my appointments next week. It is always a difficult decision especially with the added problems of waiting lists etc. My appointment came through pretty quickly - I am in Gloucestershire.

[CDreamer in reply to Tamgirl]

It can be that AF becomes progressive and that is often the reasoning given.

Whatever you decide - Lifestyle choices have the biggest impact to both help limit the AF burden but also improve your chances of AF not returning after ablation. Get as fit as you can in the time you are on the waiting list and remember that you can withdraw right up to the moment you go into the cath lab.

Good luck.

[Teresa156 in reply to CDreamer]

Hi CD,

Blood tests for those things before you take flec, aren’t regarded as necessarily needed nowadays beforehand. Whether that’s right or not, is another thing, though I’m sure she could check with her GP.

Generally now, If the cardiologist says they think flec is ok for the patient to take, they can just take it. Also nowadays, the first dose isn’t taken in a medical setting anymore ( presumably cut backs) I questioned that with mine too and was told it is not necessary. I know you mentioned not everyone has this, but I don’t think many, if any do anymore (not under the NHS anyway). I asked about monitoring after, again not necessary, I was told. I do agree with you though, there perhaps should be more checks, but this is what we’re now faced with, it seems.

From what Frootbat said, her cardiologist seemed happy that her heart is structurally sound.

I wouldn’t want to worry her unnecessarily or make her doubt her cardiologist, so just wanted to point this out, just in case 😊

[CDreamer in reply to Teresa156]

Blood tests for liver and kidney function to ensure good function are required as far as I am concerned and I don’t know anyone who doesn’t have at least 6-12 month checks.

[Teresa156 in reply to CDreamer]

Hi CD ,

I do agree ( and I do have them) but my cardiologist looked back on my most recent blood test which was on file instead to check, he didn’t feel it was necessary to have another in order to start flec, nor did he think I needed monitoring, that was all I was trying to say and of course regular blood tests should be done, ideally, but they usually come under the GP of course.

I didn’t want Frootbat worrying, that was all.

[Frootbat in reply to Teresa156]

He doesn’t think any tests necessary before taking it as I had an MRI stress test last year. Bloods all up to dat too. However I am worried about taking it! I may wait and see how frequent my attacks become before making a decision. What a horrible condition this is as we don’t know when it will strike.

[Teresa156 in reply to Frootbat]

Totally understand your worry as I too worried. I had a “pill in pocket’ of 300 mg ( max dose) that I was told to take if afib struck and I was shaking like a leaf at 4 am when I took it for the first time ( it was a couple of years ago) it was a hefty dose abd I’ve only taken it the once, but I live to tell the tale 😊 needless to say, it did get me back into rhythm and quite quickly,

Good luck in whatever you decide to do 🤞

[Singwell]

I did well on it and preferred it to Bisoprolol which made my legs ache and slowed me down. I Chose to stay on low maintenance dose of 50mg X 2 and to take extra (guided by medical advice) as PiP if AF visited. Which pre ablation was about every 2 months. Most people take a partner med such as Bisoprolol or Diltiazem to counter flecainde's potential danger of causing the heart rate to increase and maybe lead to atrial flutter. That said, there's quite a few here who take Flecainide solo with no issues.

I agree with CDreamer that it's a hefty drug. Well so is Diltiazem actually. I might not go that route again if my AF returns because I know now I'm very sensitive to pharmacological products.

[Maril1]

While waiting for an ablation in 2009 I was put on a high dose of flec as a pill in the pocket after everything else had failed but I had to attend the heart emergency centre in Liverpool Royal Hospital about 3 miles away when I went into AF so it was given flec intravenously under medical supervision and I was all wired up. This thankfully proved successful . This I repeated on a number of occasions that I went into AF under the said medical supervision before they allowed me to take it as a pill in the pocket. Telling A &E that I could go straight into the Heart Emergency Centre raised a few eyebrows and a few arguments ‘ oh here’s another nutter’ .

[secondtry]

Based on my similar experience I would say stick with that advice.

The only adjustment in my case I was started on 100mgs Flec (entry level dose) and had to increase that to 200mgs (medium dose), which has lasted now over 10 years and counting. Thanks to no comorbidities and better lifestyle choices I have had since no side effects and just 2 v minor AF episodes.

I would however push your GP for annual bloods and ECG and even if all is normal have a private appointment check-up with your cardiologist annually, not GP.

[Contra21]

If I may ask you can have all this with a healthy heart?

[Be-still-my-heart in reply to Contra21]

The first thing I asked my cardiologist was whether my heart had been weakened. I am told that it is very healthy and the pumping action is good. I exercise so I imagine this has helped. Obviously as we get older things age but I think it is possible to have arrhythmias and still have a healthy and structurally normal heart but I am not a medic and I think it’s a good thing to ask the doctor

[Be-still-my-heart]

Flecainide just didn’t work on me and I don’t know why. My cardiologist said it’s ok to take one with Bisoprolol if I have an episode and I have done this since my ablation and it seems to work. It’s only a few weeks since I had the ablation so early days

[sdweller]

Been on Flec for 4 years now, perfect NSR the whole time....taking no other drug or blood thinner...it's given me my life back. No side effects for me at all. FYI I've had paroxismal afib for over 25 years now.

[Afibflipper]

I’ve had 3 ablations, been on Flecainide 18months or so & 7 months in NSR (still on Flec). You may find it brings you control of your AF & then see if you want/need anything more - good luck