Hello! Any advice would be gratefully received, especially re Digoxin. Thanks.

[Apple88]

Hi,

This is my first time posting on here, although I have been reading lots of posts and good advice for a while now.

My AF history in brief is as follows:

Had palpitations for around a year, told GP and had a monitor fitted which picked up PAF in March 2019. Was given bisoprolol (2.5) but really struggles to function on it, especially at work so my GP reduced it to 1.25. Have seen a cardiologist twice in past year, had echo which showed a dilated right ventricle but MRI results were not of concern.

Saw cardiologist in Nov 2019 and he was happy with just monitoring attacks as I didn’t have them very often, and I was happy with that.

Fast forward to Jan this year - I started having more frequent attacks until 2 weeks ago at work I had a really scary one, resulting in HR of 150+ which wouldn’t revert. My boss called 111 who sent paramedics who caught multiple ECGs showing AF and took me in to hospital.

I reverted back to NSR in resus, and the doctor gave me a loading dose of Digoxin, to start me off and to take as well as the bisoprolol daily. I was signed off work for 2 weeks and they said they would try to bring my next cardiology appointment forward.

So my main question is this - I’ve been having some side effects from the digoxin, lethargy & dizziness but my main concern is that my resting pulse is now in the 40s. Is that normal? Has anyone else had to take digoxin and experienced this? It’s really worried me as I’m so tired and concerned as to how I’ll cope when I have to go back to work.

I’m 46, female & otherwise healthy! This whole experience has frightened me so I’d be really appreciative if anything anyone could say or offer.

Sorry this post is so long. Thank you !

[Globe-J]

Hi A 88,

Here is a link, perhaps it may help a little. Above all, don't give up. There are a number of options available to treat this pest. Pharmaceutical, surgical and perhaps psychological too.

Best wishes, keep your chin up and you'll be A1

J (-:

mayoclinic.org/diseases-con...

[Apple88 in reply to Globe-J]

Thank you. I will read that. Yes, I feel like this is certainly taking its toll on me. I hope I can get things to settle. Thanks for replying.

[zyxv]

The Digoxin is taken to lower your heart rate and seems to have done the job! I had the same as you but my HR was 220 plus - scary stuff. Now has come down but not as low as yours and I've been taken off Digoxin and Bioprolol onto Soltarol which means I have fewer side effects. I am very lucky that my local hospital is brilliant and I only have to ring them and they book me in and make necessary changes - I think you really need to get some support and guidance from a specialist as you may not need to take the digoxin anymore.

Best of luck with it all

[reinaway in reply to zyxv]

I take a heavy loading dose of digoxin when I first start an AF episode. It takes nine to twelve hours to work though but has always worked. Alongside of this I take my usual 5mcg of beta blocker Nebivolol. I don't take the digoxin except for at these times. As i am very symptomatic when i have an attack i cant tell whether the drug or the illness is affecting me just grateful when it stops.

[Apple88 in reply to reinaway]

That’s interesting, thank you for replying. I think that might’ve been better for me. I’m certainly not liking taking it every day. It seems to have changed me so much!

I will keep 🤞🏼 that I see the cardiologist soon.

[Apple88 in reply to zyxv]

Thank you for your reply. I agree - I feel like this combination of drugs just don’t suit me at all. As they were given in A&E, my GP seems reluctant to change them. Getting back in with my cardiologist seems like an uphill battle. Still no joy or any way of making proper contact with him as I see him through a clinic.

I will keep trying. Thanks.

[Hidden]

In my experience the Bisoprolol is more likely to be causing your symptoms , even on half your dose I still had side effects like yours

[Apple88 in reply to Hidden]

Well I’ve been taking the bisoprolol for a year and have been okay. It’s since the digoxin has been added that things have worsened. Maybe it’s the combined effect? It’s certainly worked in terms of stopping the AF and high HR, but has turned me into such a lethargic mess that can’t really function very well. Thanks for your reply. I’ll hopefully get to discuss it with someone soon. Not that there’s anything on the horizon yet!

[Shcldavies]

You need to speak to your Docs regarding your HR, Digoxin has a warning not to take with a low HR (from memory I think its below 50). In my experience of Digoxin my HR went to the low 40s during sleeping and the Doc changed my meds.. One word of warning - don't do anything without speaking to your Doc, whilst they do not get it right all of the time, they do (or should) know much more than anyone else.

[Bateys]

Hi, as a registered nurse we where always taught to take a persons pulse before administering Digoxin and if it was less than 60 bpm to omit the dose and inform the medical staff ASAP. 40 bpm is very slow so I would most definitely contact your GP and get some advise regarding this ASAP! Dose probably needs reduced and Digoxin levels checked . Hope this helps !

[Apple88]

Thank you to Shcldavies and Bateys. I had a call back phone consultation with my GP 2 days ago, and he said that my pulse is the 40s was “fine”! I was surprised by this but he didn’t seem that interested in what I was saying, and just told me that the drugs take time to settle. It’s been 2 weeks now since I was in hospital so I hoped I might feel a bit better but I really don’t. The doc at A&E said they’d bring my next cardiology appointment froward but I haven’t heard anything. I feel like I’m spending all of my days trying to deal with this.

Thank you for taking the time to reply. It’s really helpful to get other people’s perspectives on this.

[CDreamer in reply to Apple88]

If you can’t function - the only way it’s FINE (= F*** up, Insecure, Neurotic & Emotional) - & I would suggest they are the one who’s fine - you are not!

The question is whether it’s the drugs or the condition which is causing your symptoms.

If it’s NHS - your wait could be long - depending upon where you live & who you see. If you have the resources it maybe you could ask for a private consultation cost circa £180-£300? You can then be referred back to NHS for treatment but the reassurance of a specialist consultation can be very helpful.

Let us know how you get on.

May I also suggest you read the AFA resources- links posted by Flapjack and shows as a Pinned Post.

Best wishes.

[Apple88 in reply to CDreamer]

Thank you so much. You are absolutely right with what you’ve said.

I have considered seeing a consultant privately. I may look into that if I don’t hear back from the cardiology clinic. They said they’d contact me by the end of the week so I’ll see.

I feel like that’s exactly what I need - reassurance. I feel I’ve been given drugs to deal with the emergency but not has time to consider or discuss anything.

Just writing this post last night, and reading people’s replies has helped considerably.

[Dippy22]

I’ll just say I was given a two week course of Digoxin by A&E last year to get me to an appointment with cardiology - and was told “it’s not for longterm use”!

When I finally had my phone consultation with an arrhythmia nurse two months later, I was prescribed 3 x Digoxin tablets a day over the phone (plus Flec). They prescribed both for longterm use and she said, “Off you go and you can call us anytime in the next twelve months if you have any concerns.” 😡. The nurse wouldn’t answer any of my questions and got quite shirty with me, so I booked in to see a cardiologist privately. He looked me up and down and promptly said, “Reduce that to just TWO tablets”. Suffice to say I’m petite and slim!! It made no difference to the PAF anyway, so they stopped it after a month.

NB he also said NOT to take the Flec and he’d book me in asap for a heart CT scan, as “it may not be the right drug for you and they should have done that as a matter of course before prescribing it.” 😡

Confusing or what?!? 🤷‍♀️. I think we’re in right trouble here in the U.K.