OK, so I've been posting in the atrial fibrillation forum, but dropping in here for helpful thoughts and shared humanity. So thought it's time I posted my question here with BHF forum. For those like myself who inhabit both - this is a copy and paste job. No need to respond to both, I'm just being greedy.
Following a short-lived success with cardioversion, my EP cardiologist has prescribed Amiodarone 200mg daily. So not a massive dose. The waiting list for ablation is long, so this is a stop gap. And a lot of the drugs prescribed for paroxysmal AF are not much help for persistent AF - at least not as an antiarythmic which is what the aim is here. Chemical cardioversion. Now that has to be some hellofa powerful medication! But this EP Cardiologist is so keen to improve my QOL with my tiresome symptoms of fatigue, breathlessness and floppy fast heart beating - he thinks it's worth a try quite obviously. Along with a second CV if necessary. So picked up the prescription today and will be on the lookout for first signs of any damage - skin, eyes, thyroid, liver, and the list goes on and on!
But it must work for some people, and I'd love to hear from you! Also if there's any early signs for side effects I might miss. Buying myself a large sun hat and long sleeved shirts to avoid burning up. And got some floaty ethnic dresses that cover up most of me and factor 50 for the rest!
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My husband is currently taking amiodarone, 200mg a day. He was prescribed it after he had an emergency ablation for VT's. Initially he was taking it 3 times a day, that dropped to twice a day & he's now on a maintenance dose of just once a day. He's been on it about 6 weeks now but I can't say he's had any side effects. You're on the right track with factor 50, long sleeves, hat etc but also wear sunglasses 😎 to protect your eyes. When applying the factor 50, ensure you do the back of your neck if you have short hair or you tie it back, apparently people forget to do that!! The other thing is you need to have your thyroid, liver & kidneys tested pretty soon after you start taking it, check the time limit but I think it's something like a month?
Ps: my husband also had a cardioversion, again as an emergency, it didn't work for him but the chemical cardioversion did .
Thank you that’s so helpful, I shall be chasing the hospital up for tests! I hadn’t thought of sun glasses - must get a new pair as superglue didn’t fix the old ones! Great to hear the Amiodarone worked for your husband.
I can't actually say it's worked for him, his health is very complicated. But the initial emergency chemical cardioversion back in January certainly worked for a while. He was prescribed the amiodarone after an emergency ablation in Feb but then he had considerable post op complications including severe VT's. Unfortunately a few weeks after the ablation the VT's started again and resulted in a fairly long hospital stay. He came home last week & so far he's been ok, we can only hope this works🤞
I've been on 200mg a day for about 2 months and can't say i've noticed any side effects, blood tests were all OK and i've sat in the sun for 10-15 mins at a time with no noticable issues. What I will say is I had a 300 and a 900 intravenous when they fitted my ICD and that absolutely burned my veins so it's powerful stuff. Keep to your plan and hope that you're as lucky as me with side effects.
It's quite a toxic drug so it's usually used as last resort treatment. We were concerned about the damage it can cause and the EP assured us that 6months to a years use doesn't usually cause problems. Obviously everyone is different, but I do know of people that have been on it for years with no adverse reactions.
Thank you Andy. I’d far rather have ablation and will be on a waiting list. The problem is the longer you stay in Afib the less successful ablation is likely to be and so a try with Amiodarone is a stop gap. Hopefully won’t turn blue-grey but will keep you posted!
I’ve been on Amiodarone for almost 3 months and it’s been fine so far. Im not very good with meds and they tend to not work on me or make my symptoms worse but this so-called “Godfather” of the anti-arythmia drugs had been amazing. Even when I have AF, it makes my symptoms so much more manageable. I’ve been a bit naughty and tend to walk my dog daily in the sunshine without covering myself up and so far, I haven’t burned on sunny days. I’m such a believe in natural vitamin D that I’ve taken the risk and so far, it’s been fine. Not sure about when the weather decides to heat up…….
I’m 44 at the end of this month and deemed too you g to stay on them long term so they will be taking me off them to see if my 4th ablation worked.
Thank you so much Bee. I needed to hear this as understandably when amiodorone causes bad side effects people share their stories too. It’s good to know both benefits and risks. I’m lucky to have underlying good health and apart from AF (and wrinkles!) I seem to be a young 70. And this is short term solution, at least while NHS reduce waiting lists. Good luck with your ablation results!
I've been taking it for about six years now, 200mg a day for VT/VF (I also have an ICD) Not any noticeable side effects, but my thyroid numbers went off a bit for a while but then went back to normal. I, too, was terrified about going out in the sun, but luckily it hasn't been much of an issue for me. My advice is to just take it if the AF is impacting your life, chances are you will be fine and don't forget you'll be monitored for side effects.
It may feel like a Hobson's choice, but it is THE most effective anti-arrhythmic drug.
Thank you Colin, it’s helpful to know the amiodorone has been useful. For me it’s worth taking the risk, which all medicines and procedures come with up to a point. Definitely Hobson’s choice, but what can EP’s do when waiting lists are sky high? Glad your thyroid got better.
I tried to take it but the nausea and sickness were just too bad. This lead to an urgent ablation as the only solution. I was actually quite pleased that I couldn't tolerate it given the awful list of potential side effects.
I was put on Amiodarone prior to a cardiovertion. The cardiovertion wasn't successful and although I felt no effects from Amiodarone it affected my liver and was taken off it immediately.
Have you tried any other medications? To go straight to Amioderone sounds heavy handed. I would want to try different meds first and save Amioderone as the very last option. If you’re on Facebook, check out the group ‘stop Amioderone’.
Thank you Alixia. Unfortunately if you have persistent AF there are less choices in medication than paroxysmal, and I will only be on amiodorone while I’m on the waiting list for ablation and possibly another electric CV. I have had AF for a comparatively short time so the thinking is to wallop it with the chemical plus (potentially) another electric CV. According to my EP most of the drastic side effects occur with longer term usage. So that’s my choice, and I appreciate all the many warnings so can be extra vigilant.
I was on 200mg for around 3 years and had regular blood tests to check for any side effects. However when I stopped taking it, as was going in for a pacemaker and AV node ablation, a chest xray showed signs of fibrosis in my lungs. This turned out to be neglible but can be one of the side effects.
On the whole it was fine for me, even going out in the sun was no problem. Good luck on your journey.
Thank you that’s great to know. I’m glad you got away with so few side effects. Sometimes it’s such a balancing act between what’s worse, the condition or potential side effects.
Hi there. I took amioderone for 6 yrs. I had 3 monthly blood tests, yearly ECO and bi yearly chest xray. Unfortunately it stopped holding the AF and I came off of it. Was in permanent AF after that for 2 yrs as all the other drugs either didnt help or made me feel even worse. Had pacemaker placed last September and av node ablation in December and havent looked back.Yes Amioderone is a very "heavy" drug but it gave me some AF free years and the only problem for me was that I did have to be super careful in the sun.
All I would say is to make sure that you are properly monitored.
Thank you Nannysue, that’s very reassuring and I’m going to take extra care in the sun! It has helped so much to hear all the success stories with pacemaker and AV node ablation on this site as that could be me further down the line. Glad it has worked for you.
Thankyou. Yes another huge decision to make but it has been the best one for me.After 8yrs of AF, with 2 of them in permanent AF, it's been so nice not to be aware of anything ( I know that I'm still fibulating).
Aside from the fact that I'm now 9yrs older than when I first started my AF journey, I feel "normal" again.
Good luck to you going forward, it's certainly a journey for us all.
I was on amiodarone for cardioversion and ablation but had to come off it after a few months as it caused underactive thyroid, but it did get me into nsr. Best guess is that I was heading that way (my mother has underactive thyroid) and the drug expedited the process. Was put on dronedarone (as an alternative) and stayed on that for 3 x ablations over a year and a half period. No side effects but I never achieved nsr.
It’s amazing that a chemical can get us back into nsr at all. Sorry about the thyroid effect and hope you’ve got that sorted now. My mum in law had severe low thyroid that went undiagnosed for years, but when treated her life was transformed. I never met someone living to 100 with so much energy and fun!
Thyroid issue is permanent but, as I say, I could well have been predisposed. Yes, for me, the amiodarone was probably more effective than the cardioversion itself and the subsequent ablations which were all unsuccessful. But, as you can see from the thread its a bit of a balance of risk versus benefit.
I'd love to have your mum's energy! Good for her. A great role model by the sounds!
Mine energy is rather up and down with the thyroid and AF, but not giving up.
My husband was on Amiodarone for several years with great results and no side effects whatsoever. He spent hours in the sun with no issues. A few years ago I was put on Amiodarone and felt dreadful from day 1. However, it was doing its job well, so I persevered. I was taken off it after 3 months when I developed tremors.
It seems to be pot luck who gets side effects and who gets none! I agree with you, it’s worth the risk to see which type you are while you’re on the waiting list. I now have to stay out of the sun due to other medication, but hey!
Thank you Ads. Your husband was lucky - out in the sunshine too! I burn easy already so will be very careful - that’s if we even get a proper summer this year!
About 20 years ago I had diaphragmatic hernia repaired which involved handling and moving my heart and when I had 2 episodes of AF post op it was put down to reaction to the surgery. I had a few months of Amiodarone with no side effects at all. However, one rare but possible side effect of this drug is pulmonary fibrosis which is progressive but treatable if caught early enough. It is very rare, but something I believe patients should be warned to look out for. Any unexplained cough or breathlessness should be reported to your GP without delay.
Hi -I was super interested to read these comments today as I was put on Amiodorone 2 months ago. I had a CV in January which only lasted a week. During that week I didn’t feel any different & it was thought that it was because I had such a bad experience with Bisoprolol. So it has been decided to go for a second CV in the hope that the Amiodorone will hold me in NSR long enough to find out if I feel better, in which case I would be considered for an ablation. I have been taken off Bisoprolol & also Diltiazem which was even worse & now just take 200mg of Amiodorone & my anti coagulants. So far no side effects. My AF is there all the time - heart rate continuously 80’s-90’s. I do get tired & my legs feel very heavy & achy when I walk, especially if it’s on any incline. I am assuming that is due to the AF as it doesn’t improve so I don’t think it can be my fitness level. Sincerely hoping all of us on this drug stay as healthy as we can be. Good luck to you all on your treatment journeys.
Hello Heartening. I’m so glad you’ve found this thread so useful too. I certainly have. I was expecting horror stories. My CV this month lasted a week and have to say I felt much better but wasn’t on any meds apart from Adoxaban and very low dose propranolol just at night. Like you my AF is persistent, and HR in 80s and 90s and same symptoms. So we’re at similar stages of the journey. I do hope they’ll consider you for ablation. If you stayed in nsr for a week they should put you straight on the waiting list. Give them a nudge. I was told by my EP and several on the AF forum that a week is plenty time to show your heart can still do nsr. If necessary seek a second opinion as the longer they leave ablation the less chance of success. Wishing you best of luck.
Thank you. I think the cardiologist wants to see if I do feel better as if I don’t there is little point in going for ablation. I’m still waiting for a date for the next CV. I was told 8-12 weeks & it’s been over that already. I should then have my follow up appointment after another 4 weeks. So a long journey ahead. Goodness knows how long the waiting list will be for an ablation! It’s interesting to hear your symptoms are similar to mine so more convinced than ever it’s not just lack of fitness. Sending luck to you too.
I’ve been on amiodarone for just over two years and it’s been like a wonder drug for me. Apart from some weird (but not awful) feelings during the first few weeks I’ve had none of the dreaded side effects, although I do have to remember the sun screen after burning quite badly on a small unprotected area of skin! I did start to get some postural hypotension type symptoms but after my dose was reduced to 100mg they gradually went away. All in all I’ve felt so well on amiodarone and it’s improved my quality of life so much that I can’t bring myself to want an ablation any more, although that was my original intention.
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