Digoxin for persistent AF - side effects?

[amyrosie]

I have already posted this morning, but would like like to know how others have got on with Digoxin? I have just been prescribed it for persistent AF and feeling v nervous about taking it, having read the possible side effects. I was on Amiodarone for 2 years and felt the same about that initially as well, but it worked well until the thyroid problems started.

[Gillybean123]

Hi there, I was on digoxin for quite a while. But it started to give me lights in my eyes. They would start at the bottom of my eye then work there way around in a circle. They used to make me feel sick. But that was the only side effect. X

[amyrosie in reply to Gillybean123]

Thanks Gillybean. That doesn't sound too bad as side effects go x

[Buffafly]

Kaz747 takes digoxin and seems ok with it. Perhaps you could message her but as we are all different all you can do is try it. You've taken the top terror drug 😱 already!

[amyrosie in reply to Buffafly]

haha - you mean the dreaded Amiodarone - it was in the drawer for 2 months before I dared take it. Listing death as the first side effect on the list didn't help. x

[Kaz747]

I’ve been on Digoxin since September and I don’t have any dramas. I’m also on Atenolol (beta blocker). Since my last ablation in March my heart has been pretty good. I do get a bit tired but I’m now back at work too so I’m not sure what is caused by medication and what is caused by ‘life’.

[amyrosie in reply to Kaz747]

Thanks Kaz - I have taken Atenolol before but on Bisoprolol and Ramipril now. Prescription for Digoxin, which has been prescribed in addition awaiting collection in Boots!! Glad to hear it is working well for you and your ablation has helped. I am not sure if I will be offered that option because my left atrium is 'significantly dilated' x

[Peddling]

I have a love/hate relationship with digoxin. First took it when af began four years ago, then stopped because of the possible side effects (of which I had none) and other bad press on google. Now in persistent af, I am back on it on the advice of my cardiologist who talked through my anxieties and suggested I give it a trial period. That was six months ago and I still don’t know if my lethargy, and occasional dizziness is due to digoxin or nebivolol, or both. I’m going to carry on with it, having regular blood tests, until I next see my cardio in November. As Kaz says, no dramas, just occasional days of feeling unwell.

[amyrosie in reply to Peddling]

thanks for that Peddling. Its so hard to know what to do for the best. Amiodarone was controlling my AF perfectly, despite the horror stories, but then messed up my thyroid so I had to come off it. Sotalol came next and did nothing at all.Like you am now in Persisitent AF, since Feb this year. The occasional days of feeling unwell you are getting could just be the AF and not the medication? I think I may do a trial period too. How long have you been back on it? It took exactly 6 weeks for the Amiodarone to stop my AF. The digoxin hasn't stopped the AF then after 6 months?? x

[cassie46]

I have permanent AF and when I was diagnosed with AF (2014) I was on Digoxin, Bisoprolol and Ramipril (Ramipril for Heart Failure). I was on it for about 9 months and my memory started to play up - things like I could not remember someones name or only half their name i.e just their surname or first name and generally going to do something then forgetting what I was doing. I had read that Digoxin could cause problems with memory so I asked my GP and she took me off it. She did comment that she was not happy that the cardiologist had prescribed this for me as she considers it to be more for older people (I was 67 at the time). After a month of not taking it my memory was back to normal. It was eventually replaced with Diltiazem and I now take Nebivolol and Ramipril plus anticoagulant of course. So for me it is a no no.

Cassie

[amyrosie in reply to cassie46]

Thanks Cassie. I have read that it can affect memory and I am bad enough now, without making it worse. How do you cope with the permanent AF? Do you feel very tired and breathless? I have just had an echocardiogram which shows left atrium to be significantly dilated, as are a lot of other people with AF I know, so I think I am restricted to medication and will have to make the best of it. x

[cassie46 in reply to amyrosie]

When first diagnosed I was not told what sort of AF I had. It was not until I found this forum about six months later that I was able to fully understand all about AF. I then asked my Heart Failure nurse on one of my visits to her if I have permanent AF and she said yes. I have never been offered a cardioversion and when I asked my cardiologist to refer me to an EP - he looked at me with disdain and said carry on taking the medication. Eventually in late 2017 I got my GP to refer me to an EP at Papworth for which I paid for. The outcome is that my only course now is a Pace and Ablate which I am still not to sure of.

Regarding tiredness ect. This was gradually getting worse and also getting more breathless, I do also have mild COPD, but eventually after a battle I got the Bisoprolol changed to Nebivolol which has made a lot of difference, this was just over a year ago. I get good and bad days, but I know I have to pace myself, keep stress at bay and keep well hydrated. My body seems to tell me when I am overdoing things so I slow down or stop. The hot weather is certainly something I do not look forward to, I feel very drained when it is hot, and it affects my breathing as well. I understand next week is going to very hot in my area, so not looking forward to that. I cannot do all the things that I thought I would be doing at the age of 72, long walks in the countryside or beach, I live in a very flat area of the country so walking the dog is not to bad as there not too many hills round here lol. Even general household chores are too much at times.

So I muddle along and better off than a lot of people so have to be thankful for that and I will carry on considering whether to have a pace and ablate.

Cassie

[Hidden]

I was on it for 3 months before I started amiodorone, I had no side effect from Digoxin, and actually looked forward to taking it as I felt it working fairly quickly after taking it, and knew when it was wearing off.

Amiodorone was awful, and I'll never take that poison again

[gixxerboy]

Been on Digoxin for 4yrs now, and still happy to be taking it with all my other meds

[Luludean]

Hi amyrosie, I have been on Digoxin for many ,many years, 15?could not tolerate beta blockers, Amioderone and Flecanide turned me into a frightened zombie!! We all react so differently! You get to know your own body , it does not help if you suddenly see a new younger doctor who sneers at Digoxin for being passée ! If iteorks with no side effects be reassured. I have Propanalol as pip, hardly ever use it but, it works. Hope you find the drugs which suit you and which work. You have to be brave cardiologists can be so curt!!( nice way of putting it)