New start on Dronedarone

[Dovelady]

•Hi folks, its been a while since I was last here, but following a review by my EP , Dr Elder in Dundee, a decision has been made to change my medication to Dronedarone from flecainide . I had been on Flecainide for four years after developing Paroxsysmal AF at 65. I was offered the choice of Ablation or the Dronedarone, ablation sounded really scary as my AF prolonged episodes are really minimal but my heart rate is all over the place. My resting heart rate averages 50 but can go lower but generally I bounce along at 58 but can shoot to 150+ but only for a very short time. I’ve got a Withings Scan Watch and i’m not sure its helping my anxiety.

•I just had the Dronedarone ( Multaq) delivered today and the second warning is Do not take Multaq if your heart rate is less than 50 beats a minute. I am now feeling pretty anxious, mine often drops to 40 something during the night. I don’t actually start taking it until July 5th as I am having an oral surgery next week and wanted to get that done first.

•I’ve had an Trans Thoracic Echo which was fine and i’m getting bloods done after week one on Multaq, although I was not offered a pre blood test which I have since read is a requirement.

•I know I can discuss this all with my AF nurse and I will now do that next week before taking anything but has anyone else had concerns about starting a new drug, I need to know if there are long term implications about taking Flecainide for years.

•Sorry this is a bit long and rambling, I guess i’m just after a bit of reassurance.

[Golfer60UK]

Good morning Dovelady, Don't be afraid of an ablation for AF, they are pretty straightforward these days. Although I have had two I have developed atrial flutter so my heart rate is now around 100+. It used to be around 50 to 60 prior to AF. Certainly medication can also provide control but I decided to go the ablation route after detailed discussion with my Cardiologist who specialises with the electrics which control the heart rhythm. Best of luck

Dave

[Dovelady in reply to Golfer60UK]

I wish now i’d gone down the ablation route at the beginning , but the offer is still on the table and maybe if the Multaq side effects or results are no good I guess i’ll just have to rethink things. I appreciate you taking the time to reply.

[Tomred]

Hi dovelady I'm very apprehensive about taking any medication as I've seen the not so good effects they've had on my now deceased parents having said that after trying natural things like magnesium etc etc and getting no real measureable positive results it became time where i came to the conclusion that i have to try something to at least give me some sort of protection with an ever increasing PAF so the ep prescribed multaq and low dose bisoprolol so i picked them up from the chemist and a month later after much more deliberation I started taking them with bi_monthly bloods tests for liver function so far so good this was about 2 years ago and both do control my rate and rthym to an extent but I still feel terrible during an episode of PAF but as I've said we need something to help the situation so consider everything and make a decision and MONITOR your situation as you go along i find a notepad helpful to record any perceived changes your gp or ep can't be with you 24/7 so you really must monitor yourself good luck

[Dovelady in reply to Tomred]

Thanks Tom, i sometimes think being less informed might be the answer but I’m gearing up to taking the advice from the Nurse. I think your idea of taking notes is a good one, luckily I also have comprehensive data from my Scan Watch and Kardia. I very rarely get AF for anything longer than a minute now but my heart rate varies a lot, of course I would not know without my gadgetry.

[Hidden]

Very impressed you have an AF nurse- Hope she is helpful and supportive

[Dovelady in reply to Hidden]

Morning Sue, I am very lucky here, we have a Rapid Access AF Clinic run by Nurse Practitioners who we can contact any time , even my GP was unaware of it, but it’s a great facility. They are extremely supportive and knowledgeable. I assumed they were a standard facility but my Mum who also has AF , living in a city fifty miles away, has no such support.

[Hidden in reply to Dovelady]

Thanks for your reply, very interesting - wish the system in Dundee were available elsewhere but I’m Sandibee not Sue! Do your nurse practitioners realise how different we all are and support accordingly? Do you keep doves?

[Dovelady in reply to Hidden]

Ooops sorry Sandibee, senior moment . The Nurses are great, you meet them in the six monthly clinics usually but since Covid it has been by phone so I've known mine ever since this started , I do feel it is a personal contact.

I used to have white fantail pigeons but sadly the local sparrow hawk found them a particular favourite too and over a really bad few months we lost 24 , it was horrible. I had started with four and we had babies, it was lovely. Our last, called Only the Lonely actually managed six months as a singleton but he too succumbed and I decided enough was enough. I still have two pretty white Dovecotes in the garden, used by blackbirds and sparrows now.

[Hidden in reply to Dovelady]

RIP doves- do wish your system applied hereabouts- our surgery seems to ration attention and only allows for one medical problem at a time! When I asked for a regular check up and a regular doctor as I thought was obligatory, as I am 77, I was reprimanded!

[dmack4646]

How did it go with dronaderone ?

[Dovelady in reply to dmack4646]

Sorry for the late reply. Not so good on the Dronedarone, I got a rash and awful stomach cramps. I persisted with it for ten weeks hoping things might change as it suppressed the AF episodes, but gave up on advice of AF Team. Now on urgent list for ablation but not holding my breath to be honest. The normal list was 12-18 months .

[dmac4646 in reply to Dovelady]

Ok that's too bad - its a shame the change didn't work for you I am in the same situation - are you back on the Flecainide ? Shame the waiting list so long for an ablation ...

[Dovelady in reply to dmac4646]

Again sorry not to reply. No I am on nothing now apart from Apixaban, having AF episodes every 3-4 days now, trying an ice pack on my chest plus iced water. I’m not sure I can endure this for 12 months, Feeling helpless and hopeless.

[dmac4646]

12-18 months is horrible - I was told NHS Forth Valley 6 months recently - out of interest was also told that a break from Flecainide can mean it starts working again provided of course there are no structural problems with the heart. Have they mentioned Propafenone to you at all ? I know someone that this worked for - any way I do hope that you manage to get an ablation soon - given your situation `i would certainly try to get an earlier date even if you have to travel .

[Dovelady in reply to dmac4646]

I’ve decided to call the AF Nurse Team next week to see if something can be changed, it really is soul destroying and depressing me. Ref new drugs they just said that next steps were Ablation having tried two drugs. I will let you know how I get on.

[dmack4646 in reply to Dovelady]

Do let me know given the severity of your symptoms it sounds to me like someone needs to try and kick your case up the line - or at leat try and make the waiting more tolerable.

[Dovelady in reply to dmack4646]

Thank you so much, its got to be worth a shot .

[Dovelady in reply to dmack4646]

I got my appointment at long last! Cryoablation at the RIE , end of May. Cannot wait

[dmac4646 in reply to Dovelady]

how did it go ?

[Dovelady in reply to dmac4646]

Hi ! It went great, since I had the procedure I have had no AF at all, recovery was good, a few small minor irritations but nothing to worry about. I keep saying to myself , is this it then, am I cured? I had a follow up phone call from the AF nurse six weeks later and was told my12 week face to face with the EP might be a longer wait due to very long waiting lists. The procedure was strangely interesting and I got a free angiogram thrown in as my ECG looked a bit iffy mid procedure, but was assured my arteries looked beautiful. All in all very happy, just wished I had taken the Ablation when offered five years ago.

[Gumbie_Cat in reply to Dovelady]

I’m catching up on old posts here! I remember you getting the cryoablation at RIE, and so glad that it’s been a success. I’m on the waiting list - was told 6-9 months though the letter mentions one year. (Though I’m two months in now!)

I am jealous of the AF nurse provision, which doesn’t seem to be available in Edinburgh. The only detailed information that I’ve been able to glean, is from the AF Association help sheets. I suppose that I’m nervous in case a cancellation pops up. Do you get a pre-op, or pre-procedure where things are explained in detail? It is mentioned in the helpsheets but I’m unsure if it actually happens here or not.

[Dovelady in reply to Gumbie_Cat]

Hello, sorry you have got such a wait envisaged, my life has changed immeasurably since my procedure at the end of May, no further AF at all. Considering latterly I was having at least one a day.

I had no pre op at all prior to going in , I was surprised to be honest. Obviously prior to the ablationon the day things were explained but that was it. The info I was sent by the RIE was scant to say the least and the post op info I left with was barely any better. The AF info sheet on here are far far superior. I constantly referred to them during my recovery. I was going to bring it up with my consultant at my three month follow up , despite being told it was a face to face with him, what I got was a phone call from a registrar I had never met. I had imagined the face to face would involve an ecg at the very least and then a chance to discuss anything . But apart from a few episodes of ectopic beats and accompanying breathlessness things are ok. I mentioned these to the Reg and he said in light of the ectopic activity I would be getting an event monitor at some stage but could not give me a timeline, but could be a long wait! He suggested that post op scarring was most likely the cause but if troublesome could have a further mini procedure.

Your reply has actually spurred me on to do something I thought of at the time, I think I will send copies of the AFA info to the AF Nurse team and suggest they are incorporated into what is sent to the patients. Not everyone is on this amazing group and I am sure it would help.

All the best with the wait. Jill

[Gumbie_Cat in reply to Dovelady]

Thank you so much! The important thing for me is that it went so well, in the same hospital. I luckily don’t have daily episodes - unless they’re so fleeting that I don’t notice. I got myself a Kardia, which almost always show ‘occasional PVCs’. I’m trying not to worry about this, and assume they’ve already picked it up with ECGs and an echo at the end of July.

I’ve removed the heart rate from the front of my Apple Watch, as I think that I was getting a bit hyper-vigilant. I didn’t actually see the consultant at my appointment, although it was his clinic. I was advised to stop the dronedarone, and just needed an echo before getting Flecainide/Bisoprolol as a PIP. Was advised to go the A&E for a cardioversion if it happened in between.

It did kick off -up to 170 - after a month, went to A&E where they put me on a magnesium drip and daily Bisoprolol. Once again, heart rate down from 50s to 40s.

So now, at last, I have the ‘pill in the pocket’ at the ready (after glitches in communication at the GP)and have come off the 1.25mg Bisoprolol. Have become a little more anxious with checking, in case I don’t recognise the onset of AF, compared to ectopics. Have been advised that if it doesn’t work in 6 hours to go for an electric cardioversion - but have no idea if this would actually happen this time or not!

So really, diagnosis and care has been pretty good - but communication not so great. I think they’re just exceptionally busy with pandemic effects.

[mjames1]

Sorry what you're going through. Can I ask why they changed from flecainide to

Dronedarone? I was offered both and started on flecainide about a month ago.

[Dovelady in reply to mjames1]

I had the Flecanide changed to Dronedarone because of potential dangerous changes on my ECG, unfortunately the Dronedarone did not suit me as the side effects were not tolerable. I was then to try Amiodarone but my baseline heart rate and bp were too low to safely be on that. It did make my case for a more urgent cryoablation but to date I have had no news and am still on no medication apart from Apixaban.

[mjames1]

Was it an ep that told you to go off the flecainide?

I ask because I recently had an ecg to make sure there were no dangerous changes to my ecg as I just started flecainide. The doctor that read the ecg was a general practitioner who went by the machine's interpretation.

He walked into the room, took one look at it, and said he would like to call an ambulance to take me to the emergency department! I declined and headed to my ep's office. The ep said the ecg was perfectly within normal limits and gave me the green light to continue with flecainide. He added that he rarely even looks at what the machine thinks because it's wrong so much.

Not at all saying that's what is going on with you, but if flecainide worked, and you didn't have an ep look at the ecg, you might want to. On the other hand, ablation may suit you better.

Jim

[Dovelady in reply to mjames1]

Hi Jim-yes it was my EP, I think the issue might be as my heart rate is normally so low, I cannot take beta blockers and generallyFlecainide would not be given without a Beta blocker, which is what he said.

[mjames1 in reply to Dovelady]

Makes sense. I also don't do well on beta blockers, so I take my Flecainide with dilitiazem which is a calcium channel blocker. But I have noticed my heart rate is lower with the Diltiazem. While you're waiting for the ablation maybe you can pick your ep's brain for more options such as a smaller dose of flec which might require a smaller dose of a nodal blocker.