I had an ablation in October 2016 which was successful until I had a mastectomy in January 2018 when I went into AF. Since then I have had a few episodes of AF which seem to be getting more frequent and lasting longer. I have recently seen a couple of Consultants privately and both are suggesting that I change from Nebivolol to Sotalol. I understand their reason for this but my problem is that the very first Consultant I saw in Exeter, probably in 2015, was very against Sotalol and really frightened me about taking it. The last Consultant I saw went some way to reassure me saying that I didn't have any contra indications, such as thyroid problems but I still feel anxious about it. My understanding is that at low doses it only acts as a rate control and it is only at higher doses that it also controls rhythm; however I have also read that it is the higher doses which are dangerous. I think he is only proposing to put me on a lower dose. My other problem is that I moved to Wales shortly after my cancer diagnosis and the NHS here seems much worse than in Devon - or may be I have just been unlucky, although my GP did suggest I saw a Cardiologist privately 'because the waiting list is so long'. It is costing me an awful lot of money to have these private consultations, but I feel I have no alternative. I'm now worried that I will need a cardioversion to get me out of this current AF and privately that is extremely expensive but I dread to think how long I will have to wait on the NHS. I get so scared being in AF all the time. I am widowed and live alone. I would be very grateful to hear from anyone who has experience of Sotalol, or any other suggestions anyone might have. As far as I can establish Sotalol is an 'old' drug and I would have thought and hoped there might be something newer and better available now. Thanks. Tricia
Sotalol: I had an ablation in October 201... - AF Association
Sorry to read of your history and as a cancer survivor myself I understand quite a lot.
Sotalol is not a commnly used drug and was taken off NICE's list of suitable drugs some years ago but some cardioloists do still prescribe it. The two fold nature of the drug makes it interesting as yes at lower doses it acts a a beta blocker but at higher dose can be anti arrhythmic at the expense of some side effects which can by undesirable. I can understand your R D and E doctor being unhappy with it but I am not medically trained so can't really comment on its suitablity in your case. I suppose it really depends on which consultant you trust most.
Thanks Bob. That's sort of what I thought. It seems to me that Consultants are reluctant to disagree with one another and now that one has said Sotalol the 2 second opinions I've had are going along with the first even though he wasn't an EP. I really feel between a rock and a hard place and regret having moved to Wales. Think I need some sunshine!
My husband had to start taking it.
They started on 80mg and that wasn’t working so then gave him 160mg. I’m pretty sure it was twice a day. Toni crease it, he had to go in for a hospital stay as apparently in some people it can elongate a certain part of their rhythm. It didn’t effect my husband at all and it helped reduce his afib. He eventually got an ablation which finally ended his afib.
I am sorry to hear your concerns and can't help with the sotolol issue but just wanted to send my best wishes as it's awful to feel lost between medical opinions and not knowing which way to turn.
I have been in that situation locally and have no faith in my local hospital medics so have decamped to London medics where I am at last receiving excellent care overall both for my original cardiac arrhythmia issue and now other medical concerns. It truly is a postcode lottery and I have heard that patients in Wales are having a particularly rough time of it with the NHS there. Can only offer you a cyber hug. If you are paying consultants and can travel I would suggest a London medic they really do seem to have a beer slant on things. The main. Take care.
Hi there ! Sorry to hear about your situation. I was started on Sotalol 80mg twice daily in mid December last year. (It was changed from Flecinaide and Bisoporol which did not control my AF but gave me more AT and flutters). It was increased to 120mg x 2 and just three days ago increased again to 160mg twice daily. Sotalol is both a rate control and anti arrhythmic drug. So far I have not had any major side effects. My EP explained to me about this drug and other options before putting me on it. The main concerned about Sotalol is that it can cause TdP (Torsade de Pointes) - a dangerous VT that could be life threatening and prolongation of the QT interval. I have a check up every three months to monitor the QT prolongation and since taking it in mid Dec last year had a few ECGs done (after the dose increase) to monitor my QT intervals. So far according to my EP it is still within the acceptable range. Do not be afraid to be on this drug but bear in mind the two major side effects. May be if you are not comfortable why not discuss with your EP or cardiologist about taking it in the hospital when first administered? Some people do that, just to be on the safe side. Sending you all my best wishes and may you find a suitable drug to keep your AF at bay soon. Take care! 🤗
Oh my goodness what is Torsade de Pointes? And I don’t know what VT is either - sorry. I didn’t realise that it could have immediately dreadful effects but this was my fear. No one has suggested initially taking it in hospital which would make me feel happier but then that’s unlikely to happen on the NHS I guess. Thank you so much for responding. Tricia
Hi there! Hope you are feeling better after hearing from us on our experience with Sotalol. Perhaps before you start on it you can collate all your concerns and questions and raised them with your EP. It is always good to know what to look out for when you are on a new drug. Quite confident that your EP has assessed your condition thoroughly and the possible side effects/suitability of Sotalol for your condition before prescribing it to you. Take care !
Thank you - I do feel much more positive now thanks to all the positive response I have had. I did try to explain my concerns to my EP and he did his best to reassure me that I didn't have any of the 'nasties' but to have personal accounts from patients is worth a lot - sometimes the professionals can just be a tad 'professional', if you know what I mean! I am just amazed at how kind and thoughtful everyone is. It certainly is a big 'club' and nice to know there is so much caring and love being shared between us all. Thank you again for your contributions.
I don't know much about Solatol but, regarding prescribing I do know regarding blood thinners ....
I have family in Wales and, whereas here in Worcestershire my gp said not many consultants prescribe Warfarin due to the cost of the ongoing blood tests. So I was put on Rivaroxaban.
a relative in Wales has been on Warfarin for 10years as his gp said they don't like prescribing the newer drugs. When I related this to my cardiololgist in Birmingham he said he was aware that prescribing in Wales is different due to the funding of free prescriptions folk get.
On the other hand I do know from a friend that Morriston hospital is one of the best for complex cardiology procedures - she had hours of heart surgery there just months after moving to Wales, on the other hand while living in Devon she couldn't find a hospital able to perform this particular operation. She tells everyone that moving to Wales saved her life.
Hope you get the med's sorted - af is not easy to live its quite scary, very exhausting and can (as in my case) come on unexpected and is frightening
You have had so much to cope with beside af - and getting the right medication does vary a lot as can be seen from posts on this site it does seem consultants do have various prescribing methods - do let us know how you get on.
Ah right! - I know my friend said it was worth paying to go private as he fast tracked her for surgery.
I think a few of the consultants have practices in Swansea ?? But other than Sancta Maria there aren't any private hospitals who do private medicine.
Morriston has been mentioned in conversation by cardiologists in my area as being centre of excellence and I know from my relative that even when he was there following heart attack 10 years ago it was very advanced. In fact the medication he was put on has never changed and only had one follow-up in all those years!
My dad was certainly well looked after there and although at his age he was considered high risk they were quietly confident that they had all the right expertise to-hand.
Like most of the uk waiting times are a problem so hope you get sorted - soon.
Let us know how you get on
I was on Sotalol for around 16 months. I initially started on 40mg twice a day and then, each time it stopped controlling the AF the dose was upped until eventually I was on 160mg twice a day (max dose) with Digoxin added to the mix. When that stopped working too I was taken off the Sotalol altogether. I didn’t have any side effects from the drug. I’m in Australia and I’ve been on a number of different drugs. My heart, it seems, doesn’t want to be controlled by either drugs or procedures.
I was prescribed Sotalol a few years ago by my EP, he thought it would help prevent the atrial flutter I was getting and to be honest I think he thought me safer on that than Flecainide. Unfortunately, it didn't keep my pulse in check so I went back on the Flec, but my heart is fine at the moment and I'm not taking any control drugs. I also used it as a pill in the pocket many years ago. Your consultant knows your heart condition and thinks this pill may help, so why don't you just give it a try. Or perhaps ask if you could just take it as a pill in the pocket?
Hi, Thank you for asking - actually I seem to be getting on quite well with it. Touch wood with crossed fingers (!) I've not had any AF incidents. I don't like the fact that I seem, as one Consultant put it, less efficient but at the moment that's a price I'm willing to pay. I don't know whether I'm happy to be on it long term and when I return from my holiday (I'm going to South Africa for 3 weeks in August) I want to do some more research and I've also booked a place at the Patients Day in October in Birmingham, so I'm hoping I might learn a bit more then. I'm concerned that I've been told that my mitral valve is leaking and at my last echocardiogram it was termed 'moderate' whereas previously, prior my ablation, it was 'mild'. But that echocardiogram was done the day after I'd returned to NSR after 2 weeks of being in AF with an average heart rate of 140; so I'm hoping that's what exacerbated it and that it has now returned to 'mild'. I have another echocardiogram booked for the end of this month, so my fingers are tightly crossed for that. Once again, thank you for asking. Are you taking Sotalol? Best wishes, Tricia
My mom is on Sotalol 40 mg twice a day plus a tiny bit of Digoxin once a day now and it's working fine. She hasn't had an episode since. For Sotalol, she needs to keep her electrolytes at normal or higher levels. So bloodwork is done every so often to check her potassium and magnesium levels. If it goes low, there's a risk of fainting or Torsades de pointes. She was put on this drug when she was already admitted in hospital and they lowered the dosage to the current dosage before releasing her to go home. She tried other drugs that didn't work and some drugs are off limits because of a different heart condition, plus she also had an ablation previously.
By the way, they can actually see if there's prolonged QT and TdP on an ECG, so I find if the doctors aren't worried about something, they don't mention it but they do check.
The cardiologists that my mom saw insisted that DC cardioversion wouldn't work and it usually comes back.
If you're hesitant about Sotalol, perhaps ask if the class I drugs such as Flecainide or Propafenone would be recommended? But if you have structural heart disease, they won't use this on you. Other options to ask about are calcium channel blockers and other beta blockers.
You have certainly have a lot on your plate and I am sure the anxiety of it all is something you could really do without. I have been on Sotalol 80mg twice a day for 4 years and haven't had any issues other than 4 full on AF episodes and 3 successful DC Cardioversions. I think the main issue is the personal preference by each cardiologist, and liking to have their own slightly alternative view for good measure. During my episodes in hospital and having been transferred from A&E to the cardio unit and being on an ECG machine for 12 hours you really would have thought that they would know what drug works best so I stay with their decisions and with a level of confidence. I was previous on Bisoprolol which had become ineffective. I use Flecainide as a PIP, which has worked once and failed twice which I guess goes to show how unpredictable AF is and for me I know stress more than anything is my worse trigger. The only thing Sotalol does is to allow my heart rate to go down to 40 ( normally the average is 50 ) , the cardiologist isn't concerned but my GP thinks its too low so at a slight conflict. I do hope things improve for you very soon and wish you well.
Thank you. You’re right, stress does seem to be my trigger and there’s a lot of other things going on which I haven’t mentioned but it’s impossible to keep stress out of one’s life and difficult to predict it too; we just have to deal with it as best we can. Up until relatively recently I coped well but now AF has decided to join the party and is a very unwelcome guest! Thanks again
Just to add, I was asked by the Stroke Association ( my wife had a stroke at 56yrs old 4 years ago ) if I would like to take part in a three month trial via The Surrey University , to see if Mindfulness would help Carers deal more with life whilst looking after someone close. I have to admit I struggled at first , even just trying to relax, but eventually I got into the swing of it and am more able to control my stress and frustrations for more easily, not perfect but it's definitely a long term project. Take care.
I ve been on 160 mg of Sotalol 3 x a day (so 480mg a day) since about 2007 and no real side effects ,maybe apart from tiring more easily and loss of libido (but that could just be getting older!). It controls a congenital
arrhythmia (with a low dose of perindopril and amlodopine) . I m also fitted with a pacemaker defibrillator and very stable. It was introduced while I was in hospital in an attempt to avoid amiodorone which had nasty side effects. I didn't know it wasn't the drug of choice these days but have been given an appointment with my cardiologist next month so I ll ask about it. I was wondering why he d asked to see me as this rarely happens so maybe it's for a meds review?
I hope everything gets sorted for you soon x
I had treatment at Hammersmith Hospital which was participating in a major trial for different treatments of AF. Sotalol was suggested to me and having read so much about it on here, I mentioned that it was no longer recommended by NICE. They were very surprised and I was told that many of their patients are on Sotalol and tolerate it well.
I really feel for you, you have had and still have so much to deal with. Thinking about you and really hope you get the proper treatment, soon, AND on the NHS.
Hi Tricia - I would not worry too much about taking Sotalol - I have taken it for 20 years and had no side effects. I took 40mg x 2 daily for about 2 years , then it was increased to 80 mg x 2 daily, and I have taken that dose ever since. As for the NICE guidelines. In my experience the medics choose what they want to adhere to, many of the guidelines are ignored.
I have been on Sotalol for about 8 months without any major problems. It is not favoured in Europe but, I believe, widely used in the US. The risk depends on the dose and the prior medical condition; if you are put on a low dose (see below) the found risk of a TDP is 0%. From Wiki:
“The incidence of TdP for sustained ventricular tachycardia patients was 0% with an 80 mg daily dose, 0.5% at 160 mg, 1.6% at 320 mg, 4.4% at 480 mg, 3.7% at 640 mg, and 5.8% at doses greater than 640 mg.”
If you are seeing the consultant regularly, probably the best thing do would be to express your concerns openly and see if they can be addressed.
Hi Tricia. Anne here in NYC, U.S. I had ablation at St Francis Hospital for SVT and take Sotalol 40mg bid. Had annual follow up with both Cardiologist and EP. All is well. Must say the pages and pages of information on Sotalol was scary but when I skipped a dose almost passing out was scarier. I'm doing fine on the Rx. Stay hydrated. Wishing you a peaceful heart.
Hi Tricia239, I am in Australia and I suspect that Sotalol is more commonly prescribed here than in the UK. I’m 51 and was in excellent health before a minor stroke caused by AF. I was then put on Sotalol for about 2 months with no adverse side effects. I’m now on flecainide because the Sotalol was lowering my heart rate a bit too much (and I was still having AF). I have had a number of side effects with flecainide, so the Sotalol was generally better tolerated by my body. Your risk of serious complications from Sotalol might be different depending on age and health, but because my heart was structurally sound I was able to tolerate it with no problems.
You mention that you have a slow heart rate on Sotalol; I find that my heart rate is often in the range 55-65 (which I suppose is ok), but sometimes it dips as low as 47. My GP told me that she was “a bit concerned” about a heart rate lower than 50, but the EP did not express concern when I mentioned it. I don’t get any dizziness with the lower than 50 heart rate, which is usually 2-3 hours after taking a tablet in the evening and doesn’t usually last more than a few hours, but I wondered if there is any problem in general with such a low rate irrespective of symptoms such as lightheadedness.
Aren't we lucky living in Australia. I am the Wicked Witch from the West!!!! The system here puts the Brits NHS and access to the private system to shame. Having worked in the pharmaceutical and nursing fields for all post school years and I am now 70 years old, I have learned quite a lot about NICE which is the equivalent of our TGA. Your access to the drugs available through the NICE system depends on what Burrough you live in. If a drug is approved by the TGA it is available countrywide. It is all quite crazy and oh so complicated. I hung up my working boots when I was 66 due to the fact I developed AF. I think I had had AF for far longer than when I was actually diagnosed. I have had a lot of anxiety for many many years, mainly due to family situations and what I put down to panic attacks could well have been AF, hence the saying that a little knowledge is a dangerous thing is quite true in my case. My episodes of AF was very variable to begin with. I maybe had an episode once per year and I even went two years episode free. Then I decided to downsize and sell my house and move into a Lifestyle Village. The stress of trying to sell my house in a declining market and risking losing money, it started up again with a vengeance. I learned how to semi control the incidents by stopping what I was doing, practicing deep breathing exercises and practising meditation and even going to bed in a propped up position due to the shortness of breath.. I avoided having to go to A&E by doing this. At Christmas 2018 my AF became so bad I called the ambulance and was taken to hospital. I was admitted and was required to wear a Holter Monitor for 4 days. It showed that my heart was stopping for 2.5 seconds 5 times per day. I was taken off Sotalol and given what was called a gentle dose of Metoprolol 25mg twice a day. I contacted my own personal EP on the private system and he arranged a Pulmonary Vein Ablation for 17th January 2019. I reverted to normal sinus rhythm for about 4 days and went straight back into AF. As the heart takes quite a long time to heal. I have remained there in AF and am awaiting my three month follow up in April. My ECG is being monitored by my GP and still reports AF. However I am 59 days post ablation I try to keep my heart rate at under 100 and I am at last beginning to feel a little less exhausted. I still go and lie down for a rest every afternoon but do not always sleep, but feel more energised after the two hour break I allow myself. I apologise about the long narrative but maybe my experiences will help other fellow sufferers on this website put things in perspective. I am positive that there will be a positive outcome even if I do have to have a second ablation. There is really nothing to worry about with these procedures. Well I am talking about Australia. If I was still living in England I would be heading to Dr Sanjay Gupta at York Cardiology. He makes so much sense with these electrical problems!
Hi, interesting to hear your experience but I think it’s a somewhat dramatic solution for me to move to Oz! Ha ha! It certainly does seem that life events play a much bigger part than we appreciate and I have certainly had probably more than my fair share of stress over the years but at least it’s not been dull and boring but it now seems a bit of a high price to pay. Hope things sort themselves out for you.
Hi Tricia239! Just wanted to let you know I have been on Soralol 40mg twice daily since December 2017 and haven’t had any issues with it (other than breaking the 80mg tablets in half). I do hear a lot about all of you in the UK having to wait a long time to get cardioversions and ablations and even to get into the doc. Here in the states there is lots of talk about going to a single payor system like Medicare for all. I have always been for it but now wonder about the wait you all seem to have in the UK?
Hi, it's reassuring to hear that you've had no adverse effects. The NHS is wonderful but it now needs a really good shake up, and more money especially as drugs and procedures have advanced so much. We don't treat our NHS medics well and so spend money training them and then lose them. Too much time and energy is taken up at the moment with the dreaded Brexit! Hopefully someone will soon get to grips with the NHS. As an outsider it is easy to see where a lot of improvements could be made, but there isn't a 'one solution fits all' answer but it is something we really must fight for. Thank you for your reply.
I tried many of there drugs for afib but sotalol has been the only one I have used that controls my afib. they started me out with 80 mgs 2x aday but that was to much and made me a little sick, I now take 40 mgs 2x a day and it has been a miracle. They put me on sotalol while I was in the hospital from a episode of afib. monitored me for three days and I have been on it for almost 2 years and WOW!!! WORKING GREAT! I know how those afib episodes are scary and make you feel like hell. Everyone is different but if they asked give it a try, but let them know if you feel that your dosage is to much, make them adjust it until your not sick from sotalol or any medication. Things do and will get better.
A little late in the day to add my comment, but I thought my experience might be useful. After a bad experience with Amiodarone following a cardioversion I was put on Sotalol at 80mg twice a day and it has kept me in normal sinus rhythm for the past two years. My own view is that, while it can cause problems, these seem to be rare and should be picked up by an ECG before it is prescribed. As I don't have any side effects I am happy to continue with it.
just a quick comment, my cardiologist started me on sotalol 3 yr ago. It slowed my heart too much, so after 3 mo, we went to a diff drug for rhythm and one for rate to only take if needed. As a retired nurse and patient, Ive learned that these forums are very good but sometimes peoples comments can scare you and make you doubt your doc. Remember, specialists go to school 10-12 yr here in the US( not sure about elsewhere) so they are the ones to listen to re which meds are best for you. It is great that we all share our experiences, but dont put much weight on opinions of others re medications. If you think a certain drug is good or bad, then it is. Our minds have a lot of power over our bodies, unfortunately, lol. Best of luck to you. You need to trust your doc and dont be afraid to take your list of questions to them.
I know what you mean. I think my fear stems from the very first cardiologist I saw who hated the drug, but it seems it not so scary as I thought as long as it is monitored. I'll give it a try but wish I had some one with me for the first 48 hours or so just in case I have a bad reaction. But the Consultant said that because I tolerate Neviolol I should be able to tolerate Sotalol, so fingers crossed. Scary business - I don't know why but I never expected to have problems with me heart. Thanks for taking the trouble to respond.
Hi. I had a mastectomy and was then diagnosed with AF. I trIed lots of different meds but settled with Sotolol. Before my ablation I was in. 160 in the morning and evening which is a high dose. Since the ablation I am on 80 in the morning and evening which has kept it all settled. Unfortunately my cancer has returned so having to undergo treatment. Hopefully the ablation and medication will keep it all at bay. Good luck xxx
Oh my goodness, I'm so sorry to hear that your cancer has returned. My daughter had a mastectomy some 8 years ago and then a year ago had renal cancer; she had a kidney removed and is now, touch wood, just fine. I truly hope your outcome will be as positive. It's horrible having to deal with AF as well and my heart goes out to you. I wish you all the very best - keep strong and positive. Thank you for your reassurance about Sotalol. Tricia x
H Tricia - I just stumbled onto your thread and I understand you started the sotalol a few months ago when your AF recurred after your ablation. I just thought I should mention 2 things:
1) The problem with sotalol causing torsard de piontes VT is mainly if your potassium level gets too low, usually as a side-effect of taking a diuretic (water tablet): so it would be worthwhile getting a blood test to check it every few months (especially if you are on a diuretic).
2) There is another alternative drug called propafenone which can be very effective in preventing AF with few side-effects (usually less energy-draining than sotalol) – you could ask your cardiologist about that if you are not getting along with the sotalol.
It's a general difficulty with medicine, that everyone is different – we each have different sets of enzymes in our bodies and so we have different responses to drugs: one person may find a drug works brilliantly while in another it is ineffective or causes severe side-effects. So in practice it's usually a case of "try it and see" while taking the best precautions to avoid known problems.
Thank you so very much for taking the trouble to reply to me. Thankfully the Sotalol seems to be keeping the AF at bay and recently I have reduced the dose (myself) to 80 mg x2. That said I still feel unhappy about taking it. Currently I find I get breathless more quickly than I used to, also I sleep badly and get tired more quickly. I wish I could find an holistic solution but I don’t seem to have any specific triggers. I see the Cardiologist at the end of November when I will get the result of an echocardiogram taken in July! I’m desperately worried this will show that the ‘mild’ leaky valve is now ‘moderate’; which is probably the reason for the breathlessness - its a real concern. I will certainly bear in mind the propafenone it’s reassuring to know there is an alternative. Once again, thank you for your reply and for taking an interest.