Treatment for Atrial Fibrilation - Atrial Fibrillati...

Atrial Fibrillation Support

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Treatment for Atrial Fibrilation

Rosie0202 profile image
29 Replies

My heart is structurally fine. I have normal ejection fraction with slightly reduced long axis function but exellent radial function. I have now been in permanent AF since beginning of 2023. I'm on 3.75 + 1.25 bisoprolol. 100mg of Losartan; 2.5mg Indapamide; 1mg Doxazosin and 5mg x 2 Eliquis.

It keeps me on a reasonably steady HR of 70 - 80 BPM unless doing something strenuous where it breaks through to 110 BPM but quickly comes down. I have nothing to control rhythym. My EP suggested Amiodarone for rhythym, then a cardioversion followed by ablation if necessary. I declined.

I notice some people use flecanaide and this controls rhythym with some maintaining sinus rhythym for several years. I was rejected for solotal due to a wide QR so presumably this is similar to flecanaide and not suitable for me. I need to do something about it because my heart is now enlarged and I have fluid around the heart. My BNP was 2211 recently having been 79 in 2019. The cardiologist has not recommended anything and hasn't said I have heart failure. I know BNP can be from other causes.

My question is for those who have found flec an effective rhythym medication. Any advice.

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Rosie0202
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29 Replies
CDreamer profile image
CDreamer

For a while it did but I then developed Wide QRS and it exacerbated another condition so I doubt you would be a suitable candidate, that leaves you with Amiodarone which is the most effective anti arrhythmic but also the most toxic. Having said that, it’s kept my husband in NSR for the last 5 years or so on the lowest maintenance dose.

Is Pace & Ablate an option? Won’t stop the AF but pulse will be regular, that was my choice between Amiodarone or P&A.

Rosie0202 profile image
Rosie0202 in reply toCDreamer

When the EP suggested Amiodorone it was to start on a loading dose and then try the cardioversion. Did your husband go down this route or was he started and maintained on the lowest maintenance dose. What was the dose. My own feeling is that one should start low and upgrade if necessary. Did he have any of the toxic side effects that I have read about.

RF260 profile image
RF260 in reply toRosie0202

Hi, just to jump into this chat I started Amiodarone on 2nd January ahead of a cardioversion planned for 13th February. I took the loading dose in week 1 (3 x 200mg a day) and was half way through week 2 (2 x 200mg daily) when I was back in rhythm...so 9 days to convert after 6 months of 24/7 AFib. I had to confirm via ECG at GP which the hospital have now reviewed and confirmed no need for Cardioversion as I'm in rhythm. I have been told to continue to take the maintenance dose of 1x200mg daily, get blood tested and I will be contacted asap with next steps.To date no noticeable side effects (maybe nightmares are a bit more scary) but I await results of blood tests which were done today. I may ask about going onto the minimum dose which I believe is 100 mg a day and get on the list for ablation.

CDreamer profile image
CDreamer in reply toRF260

PS - has Digoxin been discussed? That seems to have come back in favour for some with AF & HF.

Rosie0202 profile image
Rosie0202 in reply toCDreamer

Hi CDreamer

Digoxin hasn't been mentioned; only Amiodorone.

Regards Rosie

Visigoth profile image
Visigoth in reply toRF260

I went on to 100mg after a year on 200mg and it has been just as successful, if not more as I feel better on it.

Rosie0202 profile image
Rosie0202 in reply toRF260

Hi RF260

That's wonderful and good luck in your NSR; may it last forever. I just wonder if they will still recommend an ablation when you are in NSR and would that involve maintaining Amiodarone indefinitely or temporarily. Please let me know how you get on .

Regards Rosie

NLGA profile image
NLGA in reply toRF260

Very interesting

I am day 1 loading dose

RF260 profile image
RF260 in reply toNLGA

Good luck, Amiodarone gets quite a few posts on here ranging from gave it up due to side effects after 2 days to people on it for years with no problem. I'm torn between asking to come off it Vs. risk of going back into AFib soon thereafter. I hope it works well for you.

CDreamer profile image
CDreamer in reply toRosie0202

He did but cardioversion did not work, well he converted to NSR for precisely 28 seconds after 3 tries. Loading dose was 200mg daily for 4 weeks prior to cardioversion but because of errors by various we didn’t get the script in time so he only started a few days prior to cardioversion - Amiodarone needs a loading dose and then reduce - rather like steroids - start high and titrate down otherwise you are wasting your time.

He was kept on 200mg and very gradually he started to maintain NSR after about 3 months. Two years later he titrated down to 100mg and has stayed on that and has had very minor side effects which affected his thyroid for which he take thyroxine x2 weekly to maintain function. He is now 91 and just been for his pacemaker check - 10 episodes of AF in the last 6 months which is a lot better than in persistent AF with EF of 30%, aortic stenosis and mitral valve regurgitation. EF improved to 52%, mild aortic stenosis and mitral valve has been there since he contracted Diptheria aged 10 so not change!

I have to say Amiodarone has given him a quality of life he certainly would not have had if he had stayed in AF, in fact I doubt if he would have lived as long as that all happened in 2018 so he’s been on Amiodarone now for nearly 7 years.

I would say that everyone reacts very differently to every drug but if you are refusing ablation then really Amiodarone is your only medical option in UK.

Rosie0202 profile image
Rosie0202 in reply toCDreamer

Hi CDreamer

Thanks for your very useful posting. I am keeping all options open but just taking more time to reflect on which is best for me.

Regards Rosie

Visigoth profile image
Visigoth in reply toRosie0202

As CDreamer has said, you have to start on the loading dose and go down, otherwise it won’t work. But it only takes two weeks. I’ve been on amiodarone for nearly four years and no toxic side effects. You just have to have regular blood tests etc to monitor.

Rosie0202 profile image
Rosie0202 in reply toVisigoth

Hi, So you have been on the maintenance dose for a year of 1 x 100mg but have there been any break through AF episodes on the lower dose? It seems remarkable that you have been on Amiodarone for nearly 4 years. In NSR throughout that time? What I read is that exposure to sunlight is bad and it is highly likely to adversely affect the thyroid. Have they kept you on an anticoagulent throughout?

Regards Rosie

Visigoth profile image
Visigoth in reply toRosie0202

I’ve had no breakthrough episodes of AF on the lower dose and been in NSR the whole time. For me, it is like a wonder drug! I know of course that some people have had awful side effects and that made me scared of starting on it but I’m so glad I did. I read that it’s generally considered safe at the lowest dose. I have six-monthly blood tests and checks in case of any side effects developing but I’ve had no thyroid or any other problems. You do have to be careful in the sun but as long as I put on factor 50 and wear a sun hat I’ve been fine. I’ve been on Apixaban the whole time

mav7 profile image
mav7

but if you are refusing ablation then really Amiodarone is your only medical option in UK

Sage advice by CDreamer. From reading, Flecainide is most successful with those with paroxysmal afib.

Have you researched the minimaze procedure ? Also, with due respect, I would press the cardiologist to address the high BNP and fluid around your heart.

Rosie0202 profile image
Rosie0202 in reply tomav7

Hi Mav7,

I didn't refuse Amiodarone but I first wanted more reassurance that my heart was otherwise ok so I have waited over a year to get another Echocardiogram. This came out fine with no changes since 2021. The report said "normal ejection fraction with slightly reduced long axis function but excellent radial function". My reason for asking on the forum about Amiodarone is that common sense tells me I really should be addressing the AF more seriously; particularly since the heart has become enlarged and there is fluid which they don't seem concerned about. Regarding the high BNP, they don't seem concerned about that eitherbut I'm going back to clinic in May. The test was taken not long after having covid so they will probably re-test. They aren't thinking about heart failure, it was a test I requested.

NLGA profile image
NLGA in reply toRosie0202

Your issues seem very similar to mine

I am in AF 70-80 per cent of the time my monitor yesterday recorded I was in AF 24 hours never below 100

I started Amiodarone yesterday at 3x 220mg a day for a week then gradual reduction so I can let you know Saturday week how it’s going when I have my check up

This topic is very helpful to me

Rosie0202 profile image
Rosie0202 in reply toNLGA

Hi NLGA

That's useful to know and yes please, let me know how you are getting on with the Amiodarone after your Saturday visit.

Regards Rosie

Rosie0202 profile image
Rosie0202 in reply tomav7

Hi again Mav7,

I researched the minimaze procedure and it sounds great (done in the right hands).

Regards Rosie

mav7 profile image
mav7 in reply toRosie0202

I will tag MummyLuv who had permanent afib and had a successful minimaze procedure. If she does not see you may want to find her previous posts by using the search, just use her name or the word minimaze. She has great info.

Tapanac profile image
Tapanac

flecainide was good for me taken with bisoprolol

Rosie0202 profile image
Rosie0202 in reply toTapanac

Thank you Tapanac,

If flecinaide is a rhythym control drug like Soltolol then I can't have that due to a wide QR.

Regards Rosie

Simon_P profile image
Simon_P

Hi Rosie0202 I got diagnosed with AF and HF in December following a BNP of 3390. Echocariogram showed an EF of 35%. I've decided to go down the cardioversion route to get back into NSR. I've been prescribed a Amiodarone loading of 3 x 200mg for week one 2 x 200mg for week 2 and then 1 x 200mg leading upto and post cardioversion. I'm in week 2 at the moment with no noticeable side effects (touch wood). What was your reason to decline cardioversion.

Rosie0202 profile image
Rosie0202 in reply toSimon_P

Hi Simon_P

I've just answered Mav7 so that should give you a fuller picture. Will they be stopping the Amiodarone after the cardioversion, if it is successful.

Regards Rosie

Simon_P profile image
Simon_P in reply toRosie0202

Hi Rosie yes that's the plan. 4 weeks after cardioversion I should come off it. EP doesn't want me on it any longer than necessary. I've got blood tests after 1 months just to monitor any side effects

Karendeena profile image
Karendeena

Why not consider an ablation?

NLGA profile image
NLGA

sorry to say I was taken off flecainide yesterday as it wasn’t doing the job

Ersilia2 profile image
Ersilia2

Hi Rosie,I was on Flecainide for a few months, I also had a long QR and a significantly enlarged Atrium so I had to stop the Flecainide, I’m only on a Beta Blocker a , rate control .No ablation as yet.

Rosie0202 profile image
Rosie0202 in reply toErsilia2

Thank you Ersilia2

It seems our symptoms are fairly similar and that's why they haven't suggested Flecainide.

Regards Rosie

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