Should I look for an alternative to sotolol

[Patchwork123]

I have been taking sotolol for around fifteen years 80mg morning and evening and my AF has been quite well controlled with only a couple of visits to A and E when my heart rate had gone well over 100. I have occasional palpitations etc mostly at times of stress and usually when trying to get to sleep. My question is I have heard lots of negative reports on the dangerous side effects of this drug and the fact it is seldom prescribed these days and I am wondering if I should be seeing someone with a view to changing to something else. I am not under the care of a specialist and have never been apart from my initial diagnosis, just keep getting repeat prescriptions and getting on with things. Any advice would be most welcome.

[Hidden]

Hi Patchwork, as you probably know we are not medically trained so we are unable to advise or recommend medication but as I understand it, Sotolol has not been recommended for AF for some while now. That said, from what we often hear from members, many are still prescribed the drug. If you have not had any specialist advice for over 15 years, I personally think you should seek some now. AF is known to be a progressive condition there a lot may have changed since your original diagnosis but unfortunately, many GP’s are not up to speed with those changes. If I were you, if possible, I would seriously consider having a private consultation with an Electrophysiologist (Cardiologist who specialises in arrhythmias). This would cost around £250 but be careful because any tests can be quite expensive. If this isn’t possible, then ask your GP for a referral but it might take a while in the current climate. This will enable a proper review of your treatment and an opportunity to consider all the options which are available. So in brief, the answer to your question is a BIG yes!!

[Patchwork123 in reply to Hidden]

Thank you for your reply flapjack, I think first stop GP to discuss alternatives, I am willing to pay to see a specialist as you say a lot could have changed and sometimes I feel that my condition should be monitored from time to time. Thank you

[Finvola]

I agree with Flapjack that you should certainly be seen by a cardiologist or EP and at least be given an ECG.

In fifteen years all sorts of things have changed - not least of which is the way AF is managed. I’m amazed that a GP would keep repeating a Sotalol prescription this way without asking you to make a review appointment.

I would certainly ask for a review of your health and your treatment options. Best wishes.

[Patchwork123 in reply to Finvola]

Thank you Finvola yes I am most definitely going to make that appointment.

[BobD Volunteer]

A awful lot has happened in the last fifteen years.Yes you need to see a specialist. In Uk GPs are not generaly authorised to prescribe any arrhythmic drugs without consultant level OK. And you should really be having annual reviews about your condition.

As I am sure you will understand any and all treatment is only for quality of life and not cure with AF but it might be useful to get an actual opinion from somebody who knows what is what.

[Patchwork123 in reply to BobD]

Thank you BobD

[Hidden]

Sotalol is not a dangerous drug if properly prescribed and monitored by a cardiologist. Periodic measurement of serum potassium and exclusion of a prolonged QT interval on your ECG is recommended.

The importance of lifestyle changes is now recognised, while AF ablation is becoming more routine when appropriate. Are you taking an anticoagulant? How old are you?

[Patchwork123 in reply to Hidden]

Yes I take apixaban, am sixty six and have only been on coagulants about three months my regular GP wasn’t too keen on prescribing them it was only when seeing a different GP that she had a different opinion so thankful for that.

[jeanjeannie50]

If Sotalol suits you, why rock the boat and change it? Quite a few consultants still prescribe it in the UK (mine included). Most specialised AF pills can have dangerous side effects, if you feel well with the one you're taking I think I'd stick with it. Have a chat with your GP and see what he thinks.

Jean

[Patchwork123 in reply to jeanjeannie50]

Thank you jeanjeannie yes I will.

[jeanjeannie50 in reply to Patchwork123]

So many of us have a hard time finding a pill that suits, hence the reason I say to you, why rock the boat.

[CDreamer in reply to Patchwork123]

Whilst I agree with Jean, although I refused Sotolol when suggested 12 years ago, I would take on board Oyster’s point on being monitored regularly for long QT and regular bloods.

[Kingslip in reply to Patchwork123]

I agree with Oyster and Jeanjeenie. I was on sotalol for ten years. Provided you have an annual check with your GP for liver and kidney function and FBC if it ain’t broke, don’t fix it! I made that mistake and wish I hadn’t, the alternatives can turn out to be life changing and not necessarily in a good way. See your GP as you plan and ask for a full screening. Good luck

[Patchwork123 in reply to Kingslip]

Thank you Kingslip I have made an appointment for next week. I think reading everyone’s responses I think I would probably stay on it as it hasn’t given me any problems but look to trying to reduce the dose so I am not as tired all the time and make sure I get the checks as I should.

[Lee-J in reply to Patchwork123]

I think you are right to try and reduce if possible. I was on 240mg eventually and exhausted most of the time. Reduce gradually with GPs advice. If the arrhythmias get worse though don’t hesitate to increase back up. Have you tried flecainide ?

[Patchwork123 in reply to Lee-J]

Yes that’s what I would like to do, I was on 40mg morning and evening for years, I know this is a very low dose but felt a lot better with more energy. No I have never tried any other medication.

[pottypete1]

I think Jean has a point based on the old adage “If it ain’t broke - don’t fix it”.

That said 14 years ago after many years of repeat prescription and regular PAF, I moved house to a new area and my dentist said that to be on repeat prescriptions for so long is not acceptable and recommended I discuss the matter with my GP. I was referred to an EP. This led ultimately to 7 ablations over 12 years and now my heart is more stable than it has been since it all started.

However I still take Flecainide having switched from Sotolol in the first year (27 years ago) as I could not tolerate Sotolol.

As Bob said you need to assess your quality of life. I guess that after all this time you would not have been looking at the posts on our forum if you didn’t have some concern.

Pete

[Horse57 in reply to pottypete1]

I am just curious after seven ablations why you would still need to be on Flecainide? When you say that your heart is stable now how often do you get atrial fib if you do any longer?

[pottypete1 in reply to Horse57]

Throughout the time I had the work done on my heart I continued to get PAF from time to time and indeed since my last ablation (August 2017) I have still had the odd episode. Prior to the last ablation I had PAF very regularly despite all the Doctors' best efforts.

For some ablation leads to the cessation of AF and the need fo medication but for me every time I stopped Flecainide the AF came back.

We are all different. As you will appreciate having 7 ablations is somewhat unusual and to quote my medical notes "I am a difficult case"

As Flecainide is not causing me any obvious side effects and right now I have been the best I have been for years we are not tempting fate right now.

I still think that treating heart rhythm is a bit of a black art and unfortunatley the phrase "take two of these each day and all will be well" or "this ablation will cure your AF" does not apply for some including me.

For many ablation works first time and for many they do not seek out our forum. This forum has a core membership of sufferers who do not fit the perfect solution and unfortunatley continue to fight the pesky condition.

Pete

[MarkS]

I was on sotalol for about 2 years.Looking back it was pretty awful. I used to get exhausted when I tried pushing myself a bit. It didn't stop the AF which was it's main purpose though it did suppress excessive heart rate. When I came off it it felt like a weight off my shoulders and I was bouncing around with so much more energy. I changed to diltiazem which I got on with much better.

If the sotalol doesn't actually stop your AF I would see no point in taking it. Perhaps try something else and see how you get on? I would certainly see a specialist (and just ask your GP for a referral and not his opinion!).

[Gmc54]

I stopped taking Sotalol a few years ago ( with my GP’s permission) after reading on here about the problems with it. It was not replaced with anything, so now all I take is warfarin. I haven’t noticed any increase in the episodes, although they have recently been longer in duration.

Like you I haven’t seen a cardiologist since I was diagnosed in 2009. If I hadn’t requested to come off the Sotalol no doubt I would still be prescribed it. In fact when I last visited my GP a couple of years ago because my episodes became more prolonged he wanted to start me on it again, in spite of the fact it made no difference to me when I was taking it. I declined, and was prescribed bisoprolol instead which was useless. I can only see one doctor at my practice as he is supposedly the expert in heart conditions, if I try to see any other GP they always say I must go and see this specific doctor for a heart condition. Living out in the sticks as I do there is no option to change surgeries.

[Patchwork123 in reply to Gmc54]

I would love to come off the Sotolol and maybe consider a pip? I have made an appointment with GP so the ball is rolling. Many thanks for your reply.

[Patchwork123]

When I was first diagnosed with AF they did not know the reason why I had developed it, would this make a difference as to whether I could have an ablation or not?

[Bolander]

With any drug there will be those patients who have problems with side effects and others who have no problems at all. It is still a case of trial and error to find the right drug for a particular individual. In my case an initial bad experience with Amiodarone after a cardioversion forced a change to Sotalol. It has kept me in MSR for two years with no apparent side effects, so I see no reason to change. It is contra indicated for patients with a long Q T interval, but an ECG before prescribing it should be standard practice to eliminate that risk.

[Patchwork123 in reply to Bolander]

Thank you for your reply Bolander. I have had various ECGs over the years so I presume this would have shown up. Is a long Q T interval not something that could just develop then? Is it something you either have or haven’t?

[Bolander in reply to Patchwork123]

Sorry I don't feel qualified to give a definite answer. Perhaps someone else could help.

[Janith]

I take sotalol with no issues. Perhaps exaggerated emotions, that’s about it. One breakthrough in three years. Lowest dosage. They prescribe it here in US. My breakthrough was two months ago ... when l asked the nurse about my QT Interval, she was amazed!!! Thanks HealthUnlocked! Anyway, l am still on sotalol... it is a very old and widely used medication.

[Patchwork123 in reply to Janith]

Thank you for your reply Janith, I really don’t have any issues with it only feeling tired and like everything is hard work. But this has only been since I was in hospital 18 months ago with pneumonia and sepsis and they increased my dose to 80 mg twice a day because my heart rate had gone bananas but I really think

this was more to do with the sepsis than my AF. Maybe I need to speak to my doctor about lowering the dose again to give me better quality of life!

[Janith in reply to Patchwork123]

Yes ... you should speak with your doc ... additionallly, l do notice exaggerated emotions ... sadness, happiness, depression ... normal emotions that we all feel ... just more dramatic and intensified while on sotalol ... that l don’t like. Otherwise, no issues. Sepsis is very serious ... take care with that ... good luck!

[Hidden]

Sotolol is used alot where I live in the US. After 15 yr, I think you deserve a going over and seeing if your ticker is behaving. All the drugs have side effects, I think it is a matter of what works and how you tolerate the drug

[Lee-J]

Sadly ablations aren’t as guaranteed as you suggest and should only be considered if there are absolutely no other options!