My son was diagnosed with arrhythmogenic right ventricular cardiomyopathy in March 2019. He is on the autistic spectrum and loved his running, swimming and cycling prior to being diagnosed.
He was fitted with an ICD in April 2019 and originally put on 1.25mg of bisoprolol fumarate. This seem to be fine up until October 2019. While swimming in the pool his ICD discharged 3 times. He was fine within himself just uncomfortable from the 3 shocks. We took him down to the hospital where they couldn’t really work out how he was so well. They classed the discharges has inappropriate shocks. (Basically wasn’t needed) They then decided to put his dosage up to 5mg.
At the next ICD check there had been a few raised heart rates and they wanted to up his dosage to 10mg which I have said no. We now have a letter through saying they want him to go onto Sotalol Hydrochloride 80 mg Twice a day. My only concern is he’s pretty active, runs twice a week, swims twice a week and uses the gym odd times. Trying to read up on this drug and very concerned exercising not going to be an option for him due to the hellish side effects. He’s been referred back to the heart specialist but not being seen until March.
Any information on this drug and exercise would be very much appreciated. My current feeling is to keep him on current medication until we see consultant.
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Nic6
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Hi there, I can only talk from personal experience, so please wait to discuss with your consultant before making any changes.
I've exercised on both bisoprolol and sotalol and I've found both OK. If anything, I am less breathless and have greater exercise tolerance on sotalol. It's been a good switch for me. It's also reduced the number of episodes of high heart rate so far (I've been on it for just less than a year).
The only thing I would suggest is that, were your son to make the change, he should take it slow for a few weeks while he adjusts and maybe reduce or cut exercise out completely until he's settled on the sotalol. Again, I'm not a doctor, so this is just my non-medical, let's-be-on-the-safe-side suggestion.
Many Thanks for your reply. It is a little more reassuring to hear that the drug seems to be working for you. All other comments I have read so far are all very negative.
We haven’t seen any doctor since last episode in November just a letter through post asking us to start him on this new drug.
I am due to pick the drug up today for him. He is then due back to see Dr Connelly in Glasgow in a months time so thinking it may be wise to start him on them for this before then.
Please can I ask if you feel more tired on these?
Also are there any side effects if you drink alcohol?
He always has one pint of larger on Saturday afternoon and a small glass of red wine on a Sunday. Just wondering if you have felt any ill effects with alcohol.
Everyone is different, and finding the right drug seems to be an educated guess in some cases. If you were to start him on the drug, I would suggest he is closely monitored by your GP, and has a follow-up ECG to make sure he is OK on Sotalol (most people are, but best to check in the first few weeks). I'm sure your GP knows all this though.
I don't feel more tired on the Sotalol, although perhaps I feel tired in a different way, if that makes sense. All drugs require some adjustment, but I've found I tolerate Sotalol better than Bisoprolol.
I don't drink that much, but I haven't found any ill effects of the Sotalol. Certainly, the amounts your suggesting would be fine for me (again, I would just run it past the GP).
Hi. I have been on sotalol for 15 years. 120 x 2 so quite a high dose. I tolerate it well and manage plenty exercise. I think it does slow me down a wee bit but have managed plenty hill walking and cycling with no ill affect. Alcohol doesn’t seem to affect me and I drink a couple of glasses of wine most days. It has kept my AF away well tho I have just had an ablation so looking forward to getting off it.
Thanks for replying. Feel a little more comfortable about starting him on this drug. I know it will be trail and error trying to get the right medication.
With his appointment in a months time, now would be a good time to start, hopefully iron out any issues that may arise.
Will keep a close eye on him and reduce his exercise until we are all happy.
Hi, I've tried both of those. The bisoprolol was perhaps slightly better than the sotalol. I found I used to gas out on sotalol when exercising. I'd go up a steep hill on my bike and be gasping for breath by the time I got to the top. It was though I had a booster when I eventually came off the sotalol. However I did manage to cycle to Paris and back over 6 days though that was hard work.
There are other drugs that could be considered, such as calcium channel blockers (e.g. diltiazem) which I tolerated much better. I think when you see the consultant, you need to ask about alternatives. However, some people tolerate sotalol well so your son may do well on it.
If you find the appointment too rushed, you could consider a private consultation with the top local cardio. We did this last week with my son who is disabled though that was with a gastro-enterologist. We had much more time to consider options and his greater experience really helped.
Hi Nic6, I was on Sotalol HCL 80 MG 2xdaily from 2003 to my recent (29Jan2020) successful (but third try) SVT/WPW ablation. At that dose, it was difficult for my heart to keep up with strenuous athletic exercise so I engaged in only moderate exercise. I ran a 5K with training beforehand but had to stop many times for my body to adjust to my heart not keeping up. These are my experiences from 38 yo to my current 55 yo. Not sure how it would affect your youngin' as it will affect each person differently
Hi. Many thanks for the information. Just a little nervous getting him started on this drug. He’s off college for a week soon and I am now thinking this may be the best time to start him on this new drug.
Just a little bit miffed that the only notification of a change was a letter. He’s not been seen at our local hospital since beginning of November. Personally I feel they should do another reading on his ICD to see how his hearts been acting before making such a change.
Just a worrying time, trying to keep him active while still safe.
I think he should be ok but will have to slow down so his heart can catch up. During my 17 yrs. On the Sotalol HCL 89 mg 2xdaily I never experienced another AFib event. Getting on and off the med he needs to be monitored as those are critical points for AFib to occur. My EP took me off my meds 3 days before my ablation and I have experienced tachycardia (>100 bpm) on and off while my body adjusts since then. U have the Kardia device on my iPhone to take my ECG as many times as I need to do checks. Good luck and let me know if you have any other questions
Your son and you are having to make such an adjustment with this diagnosis. Although the clinicians know what they are doing, good for you for trying to be on top of this drugs. A site that I often consult about my meds is drugs. com, and for Sotalol :
If you scroll down to "Healthcare Professionals," , the effects on different systems of the body are logged. Please do not be alarmed by all the side effects because all these side effects will not happen to your son. As you have read time and time again, each individual is different.
I believe the recent trials (at least the ones for blood pressure that I have read) state that it is better to do combo therapy rather than mono therapy ( raise the drug dose) . I state this with the disclaimer that I am not a medic. Raising the dosage from 1.25 mg to 10mg Bisoprolol is quite a stretch. It would be worth asking your heart specialist in March whether that increase would have been a good move.
Bisoprolol is a beta blocker; Sotolol is also a beta blocker but it also has anti-arrhythmic properties which may account why the letter for the change of drugs. Even though it is one drug, it acts as both a beta blocker and an anti-arrhythmic drug. Drugs.com will give you the information on dosage. Could you not phone the ICD department for an explanation of this drug and your concern about your son exercising?
Finally, there is research hope for your son. The LIRYC institute in Pessac, France (The Electrophysiology and Heart Modeling Institute ) is bringing experts from all over the world to solve heart diseases. Dr. M. Hocini, a deputy director, focuses on the ventricles and definitely children. You might want to keep abreast of their work.
Hi. Many thanks for all the useful information. I have tried to get information from the consultant who wrote the letter. While his secretary is very nice and helpful the actual questions are never answered and calls returned.
My son is currently doing an HNC in sports and fitness. Looking at the possible side effects (granted not everyone will get) I still feel a little nervous about swapping medication at this stage. I do agree and think I should phone back cardiology and raise these concerns again.
In my opinion I feel he should have gone back down to hospital to get his ICD device checked. If all has been quiet since November and the readings come back normal there should be no need to change meds.
There is no paper trail of phone calls, specifically. But, there is a paper trail of emails. Is there any way to get the consultant's email or at least his secretary's. It could be one way to force them to get back to you.
You should not just receive a letter and follow it blindly. From the consultant's viewpoint, what if the letter never got to you? How much does the consultant know about your son's exercise activity and how a change in medicine affects it or is this just the standard rote increase for everyone? Is it the same consultant who checked his ICD and wanted to up his Bisoprolol, and why didn't he offer a change of meds then? An afterthought letter to you only!
These are not questions that I want answered; I'm offering them because your son is so young and has a full life ahead of him. He should have the best attention, not only from his mother.
I don't know if you've watched any videos on arrhythomogenic right ventricular cardiomyopathy , but you might want to watch this video which is for the professionals to really understand, but there are a lot of diagrams and charts:
You will receive your first few doses of sotalol in a hospital setting where your heart can be monitored in case the medicine causes serious side effects. 🤔.
Clearly this isn’t happening for him. We just received a letter telling us to go pick Up a new drug and start twice a day. Just going to phone cardiology department.
Many Thanks for replying. Have spoke with a nurse from the link you sent. She was very good and answered the questions I had. She is totally for him starting this new drug but agrees it would be best when he’s off college next week. She also insisted on no exercise for 2 weeks. this drug may suit him better than Bisoprolol. Fingers crossed all goes well and will keep you all posted. Thanks
He’s been on Sotalol for a week and is eyes are all dry, he’s getting palpitations, tiredness and is breathing seems different.
Have emailed cardiology at our local hospital but I will be lucky to hear back from them. I am now thinking of starting him back on original medication (Bisoprolol) where he had no side effects! I have also read that Sotalol should be started very carefully with continued support.
Cannot get an appointment with general doctor until Friday pm. He does have an appointment at Glasgow with Professor Connelly, the Dr who advised Dumfries hospital to switch medication on Tuesday but feel I can’t wait this long. He’s just not himself.
Is anyone else on this drug? Did you have same side effects? Reading stories Bisporol a far safer drug!
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