Dronedarone anyone?

[Gaygay45]

I have had a cough for several weeks and I have been on Amiodarone for 6 years. My GP is concerned and has referred me back to cardiology for further investigation. Recent Chest Xray was normal but I gather this does not exclude an amiodarone induced lung problem. From what I have read it seems most of the side- effects are due to the iodine in the molecule and there is another drug called Dronedarone which has similar structure without the iodine. Has anyone any experience or knowledge of this drug? My AF has been really well- controlled by the Amiodarone so I was thinking of asking if I could swap

[BobD Volunteer]

Dronadarone or Multaq (Sanofi Avrntis) is indeed a derivative of amiodarone without the iodine and was touted as the great hope for AF-ers when it was authorised a few years ago. Sadly it did not live up to those great expectations and seems to be widely ignored in favour of flecainide at least in UK. Further there were one or two issues with liver function in the early days and regular testing is needed to watch for potentially dangerous problems.

This is the second reply I have made about Multaq in the last week so maybe there is renewed interest.

Six years is a very long time to be on amiodarone by the way. In UK and Europe it is considered by most specialists to be a drug of last resort other than for short term use (six months) over DCCV or ablation..

[PeterWh]

I see from your profile that you are in the uk. If I were you I would certainly query why you have been on it for so long. Years ago it was considered ok for long term use but not now. I would request that you see an EP rather than a general cardiologist.

[AnneTS]

Like you I am on Amiodarone and probably similarly to you it is the treatment of almost last resort. I was due to have a 4th ablation but my heart had an appalling run of bad behaviour and my EP shelved the idea. I pushed for a pace and and ablate but again my EP felt that this would not be the right thing to do at this stage. In view of my severe complex arrhythmias and the fact that if the Amiodarone kept working as it is at the moment then I might be on it for the rest of my life. It is obvious that the EP s are as frustrated by not having answers to helping the very small group that we are in as we are ourselves! I asked him about Dronedarone as an alternative to the Amiodarone and he said it wasn't as effective as Amiodarone. I do sense that there are medics working hard to try and help patients with hearts like ours but who knows when they will find the answer. With AF it can be a tortuous and frustrating journey and solutions that worked once for no apparent reason stop doing so. My EP is up there as one of the top specialists. If he says Dronedarone would not be so effective as Amiodarone then I would take that on board. Can you go back to your EP to see if there is any new treatment available to you that has been developed in the 6 years you have been on Amiodarone? I wish you every success.

[Gaygay45]

Thanks Annel. I am not in your position as I have been on Amiodarone from diagnosis. All the other drugs used for AF are unsuitable for me for various reasons. However I have not been keen to go for an ablation. I know many people think this is the best treatment but I have heard too many stories of needing multiple repeats and still getting AF or actually feeling worse afterwards. I have stayed incredibly well on Amiodarone and my regular blood tests have been fine. I am 70 and very fit and active. I shall have to see what my cardiologist/EP says. Thanks for your useful comments. I hope you find the right treatment for you too

[Rachel191272]

I have svt and have had two ablations with no success and am left with two AVNRTs which are incredibly troublesome. Flecainide didn't help me so I was put onto dronedarone in addition to bisoprolol and I have to say I absolutely love this drug. (Touch wood as I'm somewhat jinxed and daren't tempt fate). It is honestly the only drug I've ever been on that seems to stabilise me the best- so far anyway. Clearly I'm far from fixed and I appreciate that I've only been on it for a couple of months but honestly I haven't noticed much in the way of side effects (occ heartburn and nausea and possibly looser bowels but that's a small price to pay).

I say go for it. It's worth a shot and I think it has a much better side effect profile than amiodarone.

Good luck and take care.

Rachel

[Gaygay45]

Thanks Rachel. Glad you are finding it useful. Please tell me what AVNRT stands for. I don't know much about SVT but imagine symptoms are similar to AF

[countrygirl1]

I have been on Dronedarone for 5 months and feel it has calmed my heart down a lot but it has not completely stopped the AF. Before treatment I was getting weekly PAF of 8-14 hours, then when I started Dronedarone I had just over 6 weeks of complete calm, then an episode occurred then another 5 weeks of calm. I have had 7 PAF episodes in total (all I think related to stress), and have had no side effects from the drug. I have recently started taking a magnesium drink (Natural Calm) which reduced my last 2 episodes to 4-6 hours. I will see EP in October to discuss all this, my GP has been good at overseeing regular blood tests and ECGs which are indicated with this drug. Hope this helps. Good luck

[Gaygay45]

Yes thank you. It is very helpful what you have said. I am glad you are getting less PAF. Do you takethe magnesium drink regularly or just when you get an attack?

[countrygirl1 in reply to Gaygay45]

I take the recommended daily dose (a teaspoonful in water twice a day) but also have taken an extra half glass when the AF started... next time I will have a full extra glass if I need to. With Magnesium we need to start slowly because if the body gets too much it causes "the runs", I have been cautious and had no problems. I feel good on this and think it was necessary for me as my monthly blood tests showed my magnesium levels were falling slowly (possibly due to the medication - I'm on Dronedarone, 1.25 Bisoprolol, and Apixaban). Hope this helps!

[Gaygay45]

Yes thanks again. I have never had a blood test for magnesium. Are you in UK If so is it done on NHS? I might try Natural Calm. Does it taste OK?

[countrygirl1 in reply to Gaygay45]

Hi, yes I'm in Scotland and have a monthly NHS blood test because I'm on Dronedarone, they like to keep an eye on liver function etc, I always ask my nurse to test for Magnesium too because I know it's intimately connected with the electrics of the heart. When I was in hospital with fast AF they did a magnesium blood test (amongst others). The important thing with the Serum Magnesium test is that it's not entirely representative of how much is in the cells (where it's needed) because the body will keep serum levels steady by stealing from the cells if necessary. I believe a private cell magnesium test is available in London, having read about it on here but I haven't had this done. Apparently some medics think that all AF patients are low in magnesium, but I don't know, something is definitely working for me. Because I've seen my own (middle of the range) serum levels falling slightly over the months I felt it was something to tackle.

I have two glasses of Natural Calm a day, sipping throughout the day and evening and I try to have some on the bedside table in case I go in to AF (my episodes are always at night). It tastes a bit like Andrews Liver Salts (remember them!) and I find it pleasant enough. I should mention I also use a Magnesium Oil spray on my skin morning and evening (Better You brand) just following the instructions on the bottle, I have been cautious in building up the dose but am pleased to have done it. For the first time in ages I feel calm and relaxed and "normal" again. I am less responsive to stress, and no longer get a flickering eyelid when tired, or any cramp.

Sorry for the long post, and do remember this is just my personal experience and we're all different, good luck, Jane

[Gaygay45]

This is very interesting. Thanks. I have 6 monthly liver function test because I am on Amiodarone. I have never asked for serum magnesium as I thought it would not be helpful. As you say the intracellular mg is the thing to check. I understand this is done by a private company and is quite expensive. You have to ask your GP if they are willing to take the blood sample.

I wonder if it is harmful to take Mg if you don't need it?