Is there anyone else on Dronedarone? ... - Atrial Fibrillati...

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Is there anyone else on Dronedarone? As I have not read on here of anyone else taking this drug.

biggran profile image
12 Replies

I was on verapamil for over 20 years until recently, when diagnosed with AF . Bisoprolol was initially prescribed but could not tolerate that at all, felt dreadful....tight chest breathless and generally very unwell. My GP was totally useless even telling me the other week that he didnt think I had anything wrong with my heart at all and that it was all in my head....until....he had a letter from my cardio...and now he is a changed man, what a difference a letter makes. He prescribed me the Dronedarone as the cardio requested and a blood test a week later, then joy of joys I actually had an appointment to see him (appointments at my surgery almost unheard of.!) Where he was astounded to hear that I was feeling on top of the world, hardly any bumps and bangs and flutters and all in all feeling great. Smile on my face instead of crying when I saw him in the emergency clinic a few weeks before. Does anyone know about this drug as the gp tells me its very new (well he didnt know anything about it, had to look it up in his book). Is there any downside to this drug?

I have also been reading this morning some posts about warfarin side effects, my first appointment at the warfarin clinic is on tne 3rd Jan, am quite concerned at some of the posts re the side effects some people suffer. Having now got to the stage that I can get through the day and still feel awake and ready for anything I dont want to go 2 steps back with other problems.....I have almost got my own chair in the surgery and hospital as it is...

Anyway, Merry Christmas to all, hopefully we will all stay well and enjoy ourselves.

♥♡♥

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biggran
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12 Replies
pip_pip profile image
pip_pip

Hi.

Dron...is supposedly a modified form of Amioderone without the long term side effects. Only apparently not always as effective as Ami... It should help with the AF quite a bit. As for side effects, different with all users.

That said, It's uncommon for side effects for warfarin. I've never had any over 15 years.

I'm sure others will enlighten you more.

Happy xmas.

Be well.

BobD profile image
BobDVolunteer

Hi Biggran,

Dronadarone was approved over three years ago from memory. I did a load of radio interviews about it when Nice finally approved it. You should tell your GP that you need regular liver function tests (six months I think ) as there have been some problems in isolated people. I'm glad it seems to work for you as it became something of a disappointment after showing much promise in early days and seems to have fallen out of favour. Multaq is the trade name and I still have my free pen from a conference I went to back then.

I have never had any problems with warfarin by the way and been taking it for years. O K so I lead a fairly rough life building race car engines and am currently sporting the mother and father of black nails but other than that it is easy peasy. There are a few people for whom warfarin is a problem either because they react badly to it or because they are unable to get a stable INR but for those people there are new oral anticoagulants such as dabigatran, rivaroxaban etc so the important thing is to be anticoagulated to prevent possible stroke.

Have a great Christmas

Bob

biggran profile image
biggran in reply toBobD

Hi Bob

Thanks for that, my gp led me to believe it was a new drug but I had thought it might be much the same as Amioderone as from what I have read on here. I have had one blood test which was fine and have another blooked for the middle of january but he wants me to ask my cardio what intervals she wants me to have tests. I have also got an echocardiogram booked for the 8th jan so we will have to see if that picks anything else up, sure it wont.

thanks again, have a good christmas x

kernow43 profile image
kernow43 in reply tobiggran

I'm afraid I am one of those Dronedarone didn't do a lot for. The cardiologist put me on it, along with a lot of other stuff, when diagnosed, but it didn't work for me. It was stopped after about 6 months and has been blamed for causing me awful dermatology problems, which I am still trying to get cleared up. My GP seems, along with my cardio quite switched on about AF, says it has apparently turned out to be a bit of a disappointment. However as I was taking a lot of other meds at the time, I'm still not completely convinced it wasn't that alone causing a bad reaction, but it certainly didn't control my AF.

Hope it continues to work for you.....and Happy Christmas.

biggran profile image
biggran in reply tokernow43

Hi Kernow43

oh no I'm now wishing I hadn't posted this morning now, thought this was going to be my wonder drug but am now wondering how long these good feelings are going to last now after your experience. I know everyone is different and I should be thinking positivley, will now just wait and see what happens over the coming weeks.

now time for the festivities I think dont you, have a good one ♡ and thanks for your reply.

Jason1971 profile image
Jason1971 in reply tobiggran

I think the last thing you should do is worry. If you are felling good on the meds, then just embrace it. I have been on Amioderone for over a year now and I have no side effects. I have a consultation with my Cardio in a few weeks to discuss alternative medicines (Dronedarone being one of them), as I was placed straight on Amioderone without any other options. I live each day as it comes and even though I'm on a potent drug at the moment I'm enjoying every AF free day. It's working for you, so enjoy life :)

dedeottie profile image
dedeottie in reply toJason1971

I agree with Jason. If the meds work just enjoy. An individual drug may not work for ever so we should make the most of every A.F. free day and think again if and when we need to. I hadn't realised how low I had become until I began taking flecanide and it all disappeared. I've had 7 blissfully calm days.it may all go pear shaped tomorrow so I'm enjoying every second.Hope you all had a good Christmas. X

sandrobe20012003 profile image
sandrobe20012003

Firstly, Merry Christmas. Yes, I was put on Dronedarone in 2011, by a Electrophysiology Nurse with the consent of my Cardiologist. Soon after starting them, I went to a routine Cardio. appointment. They did an ECG and I was called in to see the man, who said 'Did you know you're in AF, as we speak? I had NO symptoms or signs of it and that can have its downsides as well but all in all, I would hate to have the symptoms back.

On one occasion, I went into ACU at my local hospital and the gave me an Amiodarone drip, which didn't work, like the CardioVersion x 3, they also gave me, which didn't work.

Loquitir profile image
Loquitir

I have been taking Dronedarone since it became approved by NICE in 2010. I have a history of AF of 15 + years. Prior to that I was on Amiodarone for a few years which caused me terrible skin problems and allergic type reactions. I have been on arrhthmol, disopyramide and flecanide. The disopyramide worked really well for controlling AF but eventually I was unable to urinate properly and had to switch to arrhthmol which turned out not to be as effective at managing the AF.

I could not tolerate flecanide at all because it caused me lots of neurological problems at the highest dose and it did not control the AF. I was told I had a low tolerance to the medication and not to have it again.

I had been quite concerned about going on Dronedarone because of the liver scare news story and a subsequent NHS alert letter requiring a blood test to check up on your liver etc.

But like you, I have had a terrific response to Dronedarone with no noticeable side effects and as it's used as I use it as a smart drug - use it with other dugs when I get a sudden onset of arrhythmia I always end up back in sinus rythmn. The incidence of AF have reduced. I recently had another ablation and take the Dronedarone twice daily and smart use with a sudden onset of AF. This means I have got control of the AF again. Also, I check my rythmn twice a day with the AliveCor heart monitor and keep an electronic diary using the AliveCor App. When I see any prolonged activity I send it to the EP cardiologist but also take the smart combination to get rate control. Obviously if doesn't not resolve then there are the options of seeing a dr etc.

But for me the transfer to Dronedarone for Paroxysmal AF has been a good one.

Best wishes

forestoke profile image
forestoke in reply toLoquitir

hi

I see from your post that you use an `alivecor` and i was wondering how you find this? also how does it work? i see from the online sales blurb its a bit complicated to understand what equipment is involved as i do use iphone and tablet and laptop daily.

The advice would be much apprciated and helpful. I am in paroxysmal af hand awaiting my second ablation, i keep having episodes and i am on the usual cocktail of pills Bisop/lasartan/wafarin/statin, also do you use coagucheck? sorry for so many questions but thanks in advance.

P

Loquitir profile image
Loquitir in reply toforestoke

It's extremely easy to set up and use. The device is an iphone skin which the iphone easily fits into. You then press the device against your chest wall, against your knee or hold in with both hands. There are instructions.

You down load the app from App Store. Create an account which can also be accessed via an ipad or via a webpage.

Each ECG can be printed or email to a doctor or viewed on your phone or ipad.

I used to monitor my own INR at home using coagucheck but I have since switched from phenindione (warfarin alternative) to Rivaroxaban and the new anticoagulant don't need monitoring.

I've managed to capture all my PAF episodes on the alivecor and would highly recommend it.

Loquitir profile image
Loquitir

At about the same time I switched to Rivaroxaban so no more INR checks.

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