Have finally heard from the hospital and they want me to try Dronaderone instead of Flecainide. Anyone else on it?
Dronaderone: Have finally heard from... - Atrial Fibrillati...
Dronaderone
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Thanks, just read about Dronaderone on line and it says you need a liver test a week before you start it and another a week later, I have put off trying it until I have seen the Arrhythmia nurse for bloods as I go on holiday on Wednesday.
Do they mention Propafanone as that it what I really wanted to try?
I have been on Amiodrone about 3years ago and it did something to my thyroid, but just had 2nd ablation and they have put me back on it for 3months to stabilise the rhythm.
BobDVolunteer
Dronedarone does not have iodine in it like amiodarone so is less toxic although you do need regular liver function tests,
in reply to BobD
Just had another chat with Arrhythmia nurse, we have agreed I’ll see for bloods before starting the drug. Glad there’s no iodine, have an under active thyroid.
I had a rare reaction (6 in 100,000) to both Dronedarone and Amiodarone that gave me pulmonary toxicity also referred to as cryptogenic organising pneumonia. I was told later that I had been close to death: the consultants for my case wrote a paper for the Royal College of Physicians, Edinburgh. With both be wary if you experience any of: a light non-productive cough, a sound in the chest that sounds like Velcro being parted, coffee coloured urine, SpO2 that does not respond to treatment including low volume oxygen via nose cannula. Most clinicians will wrongly diagnose those chest sounds as community acquired pneumonia, but it will not respond to antibiotics and the SpO2 will continue to fall. Additionally, a mass in one or both lungs will not be in the lobes associated with pneumonia. The treatment is high volume warmed and humidified oxygen - I was on 70% oxygen for two days - with an initial injection of hydrocortisone, then oral Prednisolone. I was not correctly diagnosed until the third hospital admission. If there are doubts, the North Bristol Lung Centre at Southmead Hospital, Bristol, Dr David Smith and Dr Andrew Medford treated me and, Professor Millar viewed my x-rays.
in reply to john-boy-92
Ouch😱
john-boy-92 in reply to
It is rare, but people need to be aware. When I was going on holiday in main land UK, my GP who was familiar with the main hospital there told me to take all of the correspondence because they will never had heard of the condition. I was doubly lucky as the prognosis was that I would have damaged lungs; survivors can require a lung transplant. I have a history of cardio exercise and maybe that saved me from noticeable damage. Suffice to say that in May this year I passed one million metres on my Concept 2 rowing machine.
I was on Dronederone for 9 months, I hesitated to start the treatment for a week as I was fearful of this drug, it’s critics less than enthusiastic, however I felt well on it , all my monthly bloods were fine, it was only stopped because I went from PAF to persistent AF whilst on it, so couldn’t continue.. Dee
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in reply to Tudee
Thanks. Di
Been on Dronedarone since end July 2018. Bloods monitored regularly and ECG checks in accordance with NICE guidance which you can check out online. For me this was a better choice as I was uneasy about potential effects of Amiodarone although it seems to work well for many. It's really down to what you feel comfortable with.
I am currently on Flecainide which works sometimes and not others, so anxious to try something else. Must make a note of the NICE guidance as know I will have to chase my surgery.
Hi Hylda
Have been on Dronaderone for 1year and 8months. Regular liver tests were performed during the first year of treatment but have remained completely normal. Initialy I had a slight rise of creatinine(kidney) which is not I believe uncommon but am now back to normal. My only, but at times bothering side-effect ,is a feeling of lethargy which may be due to a lowering of blood-presure and reduced heart-rate. Have had a few Afib attacks which have been self terminating within one to six hours. My only medication is Apixaban and Dronaderone. If your cardiologist suggests Dronaderone and you are monitored in a correct way I would definitely reccomend you to have a go at it. As for myself I am a resident of Sweden and and am being treated here.
Thank you so much, that is very helpful. I have decided to postpone starting it until after my holiday when I can get my bloods done first.
If you do go on it be very careful about sunlight exposure. My wife was on it for just 1 month when she came out in a really nasty all-over body rash. Her EP advised her to come off the drug immediately. He had prescribed it instead of Amiodarone because she's hypothyroid and Dronaderone does not affect the thyroid. You may be able to tolerate Dronaderone but bear in mind that photosensitivity is an issue for some.
in reply to tcpace
Thank you for that warning
I have never heard of Dronedarone. I take flecainide. I don't like flecainide because of the extreme constipation it causes. I take 250mg of magnesium every other day for the contipation.
in reply to Rubyray
Snap xx
I find sometimes it works, sometimes no effect whatsoever and sometimes my heart beats so strongly it’s like Concorde’s sonic boom going off in my chest xx
I only go up at the start of an episode. Sometimes they last 48 hours and they don’t go above 70 with or without meds.
Hiya,
I have been off an on Dronaderdrone for the last 8 years with no significant problems. This time I have been taking it for 3 years.
I have regular blood checks and all has been fine.
Over the last couple of years I have developed an unpleasant
sensation in my throat which travels down my right side.
It comes and goes but its only a sensation and easily put up with.
I have had 4 abalations over the last few years and numerous cardio-versions.
The period between Fib / flutter has grown less and less with each ablation.
I am due a fifth and final ablation for Atrial Flutter in the coming months.
I have been advised if this is not successful I will be looking at a pacemaker, the type which would make me 100% pacemaker dependent.
How do others who are pacemaker dependent find it?
