Dronedarone & Ablation

Hi everyone,

I posted recently that I was back in persistent AF 4 months after having a cardioversion. I received a copy of the GPs letter after my consultation from my consultant today saying he wants me to have another cardioverson and start Dronedarone. I will also need to have renal & liver function tests weekly for the first 3 weeks of taking Dronedarone. Also, the intention is to have pulmonary vein isolation.

Firstly, has anyone any experience of Dronedarone? I was on Flecainide before but experienced horrible side effects.

Secondly, the words 'pulmonary vein isolation' treatment is quite scary and I'm wondering if it is the right course of action.

One more thing, it's OK to travel by air when in AF? I'm due to be away on a business trip next week

Thanks

Stuart

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30 Replies

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  • Firstly PVI is the correct name for ablation. Read about it on AF Association main website. I had three before my AF went away but many people have success after the first attempt. Personally I would rather have an ablation than root canal treatment! For many people it is the only way to a better quality of life but do remember that you may need more than one treatment. Dronedarone (Multaq) was hoped to be the next breakthrough in AF drugs when it arrived on the scene a few years ago but is little used in UK after initial enthusiasm. It is a similar drug to amiodarone but without the iodine.

    Secondly why shouldn't you fly. I have many times in AF (but not in the front seat of course). If you are one of those of us who can function reasonably well during AF then go for it. Stay well hydrated of course and no alcohol but that is common sense anyway.

  • Thanks Bob. Common sense as always

  • I was put on Multaq for AF and it got me with one of it's side effects, I receive a flutter for my troubles,now that happened to me maybe you will handle it, ok! This one scare me!

  • Maybe you should consider changing dentists?

  • I changed after I lost my teeth!

  • Hi! So relieved to read your post as I'm yet to come across anyone else in the UK who is taking dronedarone. I don't have AF but I have got svt and have had two ablations to try to get rid of my AVNRT. (I have two pathways). Anyway, neither ablation has managed to leave me arrhythmia free but flecainide was starting to give me bad side effects and whilst it initially reduced the number of episodes, I was still very symptomatic so they switched me to dronedarone (plus bisoprolol which I've been on for years). Pre my second ablation they stopped my beta blocker as well and just had me on dronedarone.

    What can I say? It's wonderful in terms of stabilising the heart. However it causes fatigue that makes beta blocker fatigue fade into insignificance! I've had to split my tablet and take the bigger half at night to help with the apparent narcolepsy I get with it. This definitely helps me. I originally had to have monthly blood tests but now it's every 6-8 wks. It has honestly had more effect on my arrhythmia than any other drug and I just wish I'd stayed on this and not had my second ablation but I guess that's the benefit of hindsight hey?

    So I'd say go for it and I would be really interested to hear what you think of it. I would say too that whilst it's the newer amiodarone, as Bob correctly states, because it doesn't contain the iodine, it has none of the iodine related side effects (of which there are many).

    Good luck!

    Rachel

  • Amiodarone, took it for 10 months and now have to take Synthroid it destroyed my thyroid! Meds suck!

  • I took Dronedarone for two days and ended up in a&e because of it, I have not had two worse days during my time living with PAF. I am sorry to be negative and wondered if I should post at all but unfortunately there has to be balance. We all react differently to these medications and hopefully this will be the one for you. Good luck John

  • Thanks for the response John. Can I ask what side effects were to put you into A&E?

  • Hi Stuart, I dont have a terribly fast heart rate usually when I am in AF, but on the Dronedarone my heart went crazy. There is the possibility that it would have settled down in time but I was a bit scared and went to the GP and inevitably got sent to A&E, And they advised to come off it straight away.

    I am now using Metropolol as a pill in the pocket, because nothing I have taken long term has stopped the AF, which includes 4 ablations!!

  • I must declare an interest here. When Multaq was approved by NICE I was one of two patients who appeared in a film made by Sanofi Aventis about AF and how it affects people's lives which was shown at I think a Heart Conference in Barcelona.I was also able to show the film at HRC that year during a presentation I did. I also did a number of radio interviews about AF and this new wonder drug. Sadly after a few months it became apparent that the rigorous liver and kidney checks which the drug needed and the careful attention to suitability of the patient for it were not being followed and some patients were suffering serious side effects. It is only recently that I have noted people here talking about the drug so maybe with the right vetting it is coming back into use.

  • Sorry to be negative too but had to come off dronedarone after two days also due to side effects.

  • Thanks fro the reply Colin. Can I ask what the side effects were?

    Thanks Stuart

  • Hi all

    I was on Multaq for a couple of years, it has frightened me to read that you all had rigorous liver and renal blood tests as I didn't have any! although I did have lots of waterworks problems that I have just realised have stopped since stopping Multaq for skin reaction reasons. I could not go in the sun at all without hat and being covered from head to foot ! And inched constantly. I am now on Flecainide which seems to be working reasonably well but I am wondering what side effects everyone is experiencing as since I have been taking it I have had 3 major bowel ops and have been feeling really rough for the last 17 months and maybe having side effects that I have been blaming on something else entirely. I am due for a review in January so would like to be better armed with questions to ask if anyone can help me

    Thanks

  • I took Flecainide for about 3 weeks. On day one of taking the first pill I began having visual disturbances in my left eye, flashing lights and floaters. After about one week on the drug I felt like I had the flu all the time, body aches, no energy, headaches. I stopped Flecainide after 3 weeks. I'm now on multaq with no side effects that I'm aware of but it's not helping my afib. I want a third ablation but my ep is hesitant (he's not the one that does ablations and the ep that did recently left my ep's practice). I believe his hesitancy is because he doesn't want his old partner to get me as a paitient. I see my ep next week and if he still is a no go with the ablation I'm switching ep's.

  • Yes Stuart, first feeling unwell, no appetite, then weakness in my legs causing me to nearly collapse and then nausea through the night. Also loose bowels! Was on flecainide before that and it worked brilliantly for me for nearly eighteen months before bradycardia symptoms started so medication changed to dronedarone which unfortunately didn't work for me. Seeing the cardiologist in December to see what next step is. Everyone is different and it may work perfectly well for you. Good luck.

  • Hi Colin,

    I wondered how you got on with your visit to the cardiologist? I have started to experience what I think are side effects of Dronedarone, with aching and weakness in my legs as well as frequent urination. Flecainide also gave me bad side effects. Not sure where to go from here.

    Cheers,

    Stuart

  • Hi Stuart, have been put forward for an ablation, hopefully in about ten weeks from now. As flecainide and bisoprolol even in small doses was making me bradycardic I am now on flecainide as pill in pocket. However, this past week I have had two really bad attacks of AF and landed in A&E to get my heart rate down so not the best start to 2017. Am optimistic though and looking forward to ablation working and feeling better in a few months. Have you got another appointment regarding your dronederone?

  • Hi Colin,

    I'm having a cardioversion tomorrow and will then see the consultant for a follow up in a few weeks to discuss the way forward.

  • Good luck with the cardioversion tomorrow and then with the follow up appointment afterwards.

  • Hi I've been on Deronadrone since August and no side effects at all and no af. Was put on this after my ablation as had af start again 3 weeks after it. The nurse in the hospital I was in said in all her 13 year working there I was the first patient she knew to be taking it and the hospital one of the main heart ones up north. I'm only meant to be on it short term but until see cardiologist in January plans could change.

  • Do you mean Amiodarone? That is what I was on.

  • Hi Stuart,

    I have been taking Dronedarone (with 1.25mg Bisoprolol) since February. I had my first blood test done at three weeks, then monthly for six months, and all has been well. I felt my heart is much calmer on this drug, although it has not entirely stopped my AF.

    I am now considering whether Dronedarone may be the cause of my increasing leg muscle weakness; if so I will have to stop it but I will miss the sense of security it's given me that heart rates in AF will be bearable. Dronedarone is an expensive drug, and I've been grateful that it was the first anti-arrhythmic drug I've tried.

    Hope you get on well with it, Good Luck, Jane

  • Thanks for the replay Jane. My consultant says I will need to stop Bisoprolol (2.5mg) and only take Dronedarone. I must admit I'm worried about taking this medication.

  • Hi

    I have been on Dronedarone for 4 years no side effects . The first 18 months I had 1 episode of PAF as apposed to weekly no side effects but still have blood tests 3 monthly no problems as yet. The frequency of PAF has increased but my heart rate during the episodes is mostly under 100bpm. I am waiting for a date for the second ablation.

    Hope you are one of the lucky ones with no side effects and a good response to the medication.

    Good Luck

    Pauline

  • I've been on Dronedarone since my Ablation in June and feel generally better than I did on Flecainide. But, having read this thread, I wonder if getting up to pee 5 or 6 times during 8 hours sleep at night/ increased arthritic aches and pains/ the odd dizzy feeling when I'm tired could be due to the Dronedarone? Any comments would be most welcome.

  • Hi Mary,

    I started the drug this week and have been getting up in the night for a pee every night so far. Most annoying!

  • Thanks for this Stucoo. Think I need to have a chat with my specialist as so many visits to the loo don't exactly make for a good night's sleep! The other point I was going to post is that I've never had any testing done since I started taking Dronedarone after my Ablation in June.

  • Hi all I was on dronedarone and digoxin for approx nine months until my ablation in January then both were stopped I went back on the dronedarone as I did not feel so well but after gradually cutting down the dose I am now not taking it. I had no side effects in fact I felt really well on it and would have opted to stay on it if I had not had a successful ablation. as far as I am aware you can only take it for six months unless you agree to taking it 'unlicensed' which I did. initially I had all the tests for liver function which settled down once I was established on dronedarone. I never found any benefit to the dioxin while taking it but when I stopped I had more energy. Hope this helps

  • Thanks for the replies, good and bad. I am really not sure about taking this drug and I thought Flecainide was bad. I tend to read lots of reports and pick on the negative aspects and it scares the hell out of me.

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