Just interested to hear from any forum members who have used / or are using Amiodarone to treat their afib. To help with afib it seems to be a last resort medication - I understand that it can and does cause bad side effects. However if you can tolerate these it appears to be the most effective antiarrhythmic med out there. At the moment I'm on Sotalol before my CV (long time coming) but I am thinking about talking to my cardio regarding starting Amiodarone instead before my CV. I feel that after researching it Amiodarone is the most likely medication to keep me in sinus. I have read some posts here that imply no way would I touch it. I'm on the fence about this one and would be very interested to learn how others have got on with this drug.
Thanks in advance for any answers. I have used the search box here and the answers seem to vary from poster to poster. Some say they had very bad side effects and had to stop - others say it worked better than an ablation and is the only thing that stopped their afib. Sorry if I'm covering old ground with this one but it may help newbies and myself by resurrecting the subject.
Paul
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Thanks for your reply. The lung issue is of great concern. I think permanent afib (controlled) would be a better option than lung damage. No way would I want to chance that ! Sorry to hear Sotalol didn't work for you - I have been fine on it so far but med's affect different people in different ways.
Thanks for that. It does seem to have happened to a number of forum members though. Were you told this by a medic or was it something you read online ?
Hi Paul , I was put on amiodarone after my second cardio version , so about a year after I started with AF . I knew a lot about this drug as my brother had been on it for 10 years before his eventual death aged 41 from heart failure ( he had transposition of the main arteries from birth ) . So I was very scared as I knew about the side effects , can turn your skin a grey colour , sun sensitivity , fibrosis of the lungs , liver toxicity etc .
However , it kept me in sinus rhythm until I had my first ablation . I was on it for just over a year and had to come off it a little sooner due to corneal deposits affecting my line of vision . I was monitored with regular blood tests and had a chest X-ray beforehand so that changes could be compared if I did get lung issues . I recall I was never ‘happy’ being on it and I felt tired a lot . BUT , in retrospect that was better than being in AF where I feel awful . The corneal deposits luckily did eventually resolve , thank goodness .
I am now on amiodarone’s sister drug dronedarone , still toxic , but less so than amio. However , not as effective . I see a lot of people on this forum are on flecanaid , which sadly I didn’t get on with at all . Felt very unwell on it and not effective for me in maintaining rhythm . We are all so different !
Thanks for your reply - some food for thought in there ! Dronedarone is something I will look into. I must say that the lung and eye problems that can be caused by Amiodarone are very off putting - it certainly is a decision not to be taken lightly.
I'm sorry to hear about your brother passing at such a young age.
Dronaderone (MULTAQ) was the great white hope when it was first licenced. (In fact I earned the charity a fair wedge by taking part in a film about AF for the company that made it , possisbly around 2008). Sadly in America it attracted a class action due to inappropriate prescribing (not checking liver function) resulting in a few deaths and fell from grace. Being a new drug thousands of people clamoured to be put on it resulting in excess pressure on local doctors who made mistakes. Not the drug company (Sanofi Avensis's ) fault.
In the last few years it seems to be used more . For some people it works well but not universally. It is far less toxic than amiodarone, not containing iodine for a start.
Dronaderone isn't something I have really considered in the past. However it sounds like it might be a better option than Amiodarone and more effective than Sotalol. Maybe this the way forward for me - I'm going to do some research about this drug as it sounds of interest. If I find out anything interesting I'll start a new thread if it might be of help to other forum members.
That's good to hear. The more I learn the more I think Dronedarone seems a better option. Long time since we chatted - I hope you are keeping well and healthy.
Ah I misled you,I meant follow up check up after my ablation in June. Have had no contact since,have rung and the nurse said they are running behind!! Xx
Somwwhere in this thread, I mentioned my experience with dronedarone. That started the "old guy, must be pnuemonia" route with the first admission; that continued with the second admission that added amiodarone; that ended with the third admission and Professor Millar who knew immediately what it was, and nothing to do with my age.
In a way this string has moved full circle. You canvessed opinion on whether or not to take amiodarone and got a mixed response. You might consider dronedaone, and you'll get the same response.
For the record, I take pradaxa (anticoagulant - I've had a stroke), ramipril (blood pressure), finisteride (potentially dodgy prostate). I don't take rate control, principally because my heart rate can drop low at night. I'm asymptomatic. On the rowing machine I can hit 190bpm if I'm not careful. I've moved from being a "gutter bunny" and "gym bunny" to being a lab rat.
Just waiting to see what the Public Accounts Committee call for evidence about the DVLA backlog produces. You've got until the afternoon (I think) on 18 November to comment.
CONTROLLED by Diltiazem CCB Calcium ChannelBlocker.
Amazingly taking Diltiazem 120mg 8am or earlier after leaving an early gap after my thyroxin tabs.
My journey STROKE Embolic Sept 2019. with undiagnosed AF Rapid & Persistence and 4 days on a Carotid Arteries Scan showed a shadow on my thyroid. 2 mths later Papillary Thyroid Cancer. Removed within 4 mths of stroke with Encrinologist arguing that they must wait 6 months!
Luckily my surgeon and anaesthetist won to do it earlier. Even the January became February because my booking clerk went on holiday and patients after me with bowel cancer!
The results when thyroid and 12 lymph nodes were removed 2 lymph nodes showed cancer in 2 right lymph nodes.
I was very lucky with a team which knew thyroid cancer was lethal. The anaesthetist had had his removed years ago but it was a late find for him.
These two also removed a carcinoma in situ found on the 3rd op in the milk duct of my right breast 2005.
Can you perhaps ask to be tried on CCB Diltiazem? As my 47 H/B minute continued throughout use of Metroprolol, Bisoprolol and Dilriazem.
My meds are 120mg Diltiazem am and been reduced to 1.25mg Bisoprolol pm.
Your H/R Day and Night should be controlled otherwise it wears out your heart and likely to enlarge it.
But you need to be carefully watched starting a CCB.
Thyroid problems can cause AF. Usually there are 2 factors such as Thyroid and Hyopertension or anxiety factors.
The Scan Echo shows the heart chamber is enlarged. An Xray shows it at the largest as normal so I asked. He said the Xray wouldn't show an enlargement hidden around the corner.
Yes 2019 in hospital with a stroke. AF and undiagnosed Thyroid cancer.
But if I hadn't had my Carotid Arteries checked by neck scan no one would know that that's what caused the stroke and AF.
I had rapid persistent AF in hospital and this remained for 2 years 3 months until CCB.
I wrote to DHB Heart Specialist I was under saying I had no quality of life and she did nothing.
We have locums at my clinic and I use them as the main Dr is STUPID.Not a Dr you would have trust in but a 80s lady took me under her wing. I adhere to her instructions or guidance.
Nice place Hawkes Bay and last time I was down there I explored Waimarama where our family went every year for Christmas.
The motor camp had changed position.
I used to holiday at YHA Napier and watch the dolphins perform from the top window. I hear the YHA closed and no longer a Marine Centre.
I'm lucky with GP and cardiologist their both very proactive they got all three of my ablations done privately in a hospital near the Waikato one.Let's hope things get better for both of us as the year ends.
A younger late 50s had 4 meds and finally in NZ he was allowed ABLATION. The specialist found 2 electric responses going off the same time. Since October no drugs! No AF but he had para.... not persistent.
I want to carry on with something more on going after my CV (assuming it works). It does appear that Amiodarone is often prescribed on a short term basis.
After my ablation my heart went bonkers ( they had taken me off all medication). I saw à cardiologist 2 weeks later who said my heart needed a rest. She put me on Amiodarone. I was on it for 10 weeks. During all that time I did not have any arrythmia, extra-systoles or flutter or problems. It was wonderful! Flecainide and Sotalol didn't work for me. If it is just for a short while it might be worth asking your cardiologist.
Great to hear it worked for you. Your answer makes me think it might be worth trying for a short time (such as 10 weeks) to see if it returns me to sinus. Once I'm in sinus I tend to stay in it for a while but I always need a helping hand to get there (hence the CV). Again this food for thought so thanks for your input. It is certainly worth asking my cardio for his opinion.
I tried this medication in July this year as a last chance to find medication for AF that I could tolerate. I had read about the side effects and was reluctant to take it but felt that I had no choice. I was okay for a couple of days but then the nausea got worse and worse. On the fifth day I could not even keep a glasglass of water down. My GP spoke to my cardiologist and it was stopped. I must say I was relieved not to be taking it but I tried. I was then put on a list for an urgent ablation which I received in early October. In my opinion , it should be avoided, there are alternatives.
Sorry to hear it didn't work for you but at least you tried and know the answer about taking it. In your shoes I would also stop right away. This is what I have learnt from your post - if I do take it I would contact my GP on the spot should side affects appear.
I totally get your point Norfolk but in some instances it is a life changer . It took my brother off the heart transplant list and he had 10 good years ! He had a very complex heart condition and heart failure , some anti arrhythmias can’t be taken if there is heart failure as well .
Hi Paul; you've done the research; you'd like to take amiodarone but want reassurance. You will have seen in this forum that some people can tolerate amiodarone (and dronedarone), whereas in others it had significant deleterious effect, including near-critical. There isn't a one-size fits all answer at the moment.
However, I'll approach this from another route. I will be taking part in a NICE study that looks for a mutation in the CYP2C19 gene that metabolises clopidogrel (also omprazole and diazapam). Clopidogerel is given after a stroke or heart attack to reduce the possibility of a second event. If there is a mutation of the CYP2C19 gene, then it reduces the effect of clopidogrel. There may be a genetic reason why dronedarone and amiodarone were near-fatal for me, but helpful to others. If AFA / BHF would like to fund a study, I will be happy for my genetic sequence to be compared with someone who has had a positive outcome from amiodarone / dronedarone.
"If there is a mutation of the CYP2C19 gene, then it reduces the effect of clopidogrel. There may be a genetic reason why dronedarone and amiodarone were near-fatal for me, but helpful to others. If AFA / BHF would like to fund a study, I will be happy for my genetic sequence to be compared with someone who has had a positive outcome from amiodarone / dronedarone"
There could well be a genetic reason why people respond in different ways. This is worth further investigation. If there is a genetic link then this gene should be tested before embarking on a course of Amiodarone. People would know then if it was safe to take or not.
I had never considered that the efficacy of some medication relates to how well it is metabolised by genes. Over the years I've been prescribed clopidogeral, omprazol, and diazapam, but other than the diazapam, I've no way of knowing how well they worked. I can say that seratonin re-uptake inhibitor antidepressants make me worse.
From time to time, AFA will post calls for volunteers to take part in studies. These are generally surveys. That said, the more people who take part, the sooner there may be more solutions. I was part of a small team of stroke survivors who worked for three days with web designers on a refresh for the Stroke Association (SA) web site. The feed back from the stroke survivors about the positive effect of the hard mental work, was a surprise to the SA and that shifts perceptions. I'm also a mystery patient for medical students from a University. On one session with third year students, none of them had heard of FAST (physical indicators of a stroke). I fed that back, and the following year, the second year students knew about FAST. If AFA / BHF or others in the medical community call for volunteers, all of us in this forum have something to offer: think about volunteering.
Well done you for volunteering. This is certainly something I would do if asked and it would help others. Regarding 3rd year students not knowing about FAST ? What can I say. I have a tale to tell about a young qualified doctor I saw recently which is even worse - still that's another thread another day.
When I had pulmonary toxicity, it was thought that I had community aquired pnuemonia, probably because of being old. I was discharged, then readmitted into a geriatric ward. In the next room was someone with severe dementia who required 24 hour care. I was there for two weeks - lots of scans and x-rays, blood samples, powerful antibiotics, saline drip with amiodarone, young doctors. A young doctor discharged me without medication or a follow up; not responding to antibiotics should have told them it wasn't pnuemonia. A couple of weeks later I saw the Practice nurse for a creatine check. On the ball, she rang my GP who stopped me in the corridor and measured my SpO2 at 76%: he said go straight to A&E and the hot clinic will be waiting for you. That night I went hypoxic and they wanted to sedate me and put me on a respirator in Intensive Care.
That was a wake up call to get involved whenever possible, to try and stop this happening. We as patients need to tell our side of the story when there's the chance.
"we as patients need to tell our side of the story when there's the chance"
I totally agree. Doctors don't always get it right as happened to you in the first ward. It's not like buying the wrong flavour crisps in the pub for a mate - this a life or death decision which could prove fatal if they make the wrong call.
Amiodarone did not keep my heart in rhythm when I took it, but what it did do is damage my thyroid and I've recently been told that I have scarring on my lungs - which is another side effect. Please don't take it.
HiJean. My lungs still bear the results of dronedaone and amiodarone. The images of my lungs (on the Internet) look the same as someone who had severe COVID with masses in both lungs. I was on prednisolone for a year afterwards, and the resultant high blood pressure was probably a contributory factor to a stroke. The positive side is that the medical team wrote a paper that was published by the Royal College of Physicians of Edinburgh and, put on the Internet. I had hoped that clinicians would pick up on the indentification signs. However, a recent post on HealthUnlocked may show that this is not happening.
I had no idea that my lungs were scarred until my GP recently asked if anyone had ever told me that they were. Honestly, it's like its none of our business to be told things that aren't quite right with our bodies. Sorry to hear that yours were damaged to. Have you the link to the images of your lungs on the internet?
I've now found the paper on my case submitted by Dr. Medford and published by the Royal College of Physicians of Edinburgh. The paper is titled "Organising pnuemonia due to dronedarone" dated 2015. J R Coll Physicians Edinb 2015 45: 213–4 dx.doi.org/10.4997/JRCPE.20...
That link will open the abstract. The tab next to it is marked pdf, and the first page has an x-ray of my lungs. They became worse that that.
The medical team were eventually delighted that I was better than the projected outcome. The consultant said, we could do a CT scan but there's no point as we can't repair the damage. I was classified as clinically extremely vulnerable during COVID. That led to my submission to the parliamentary Public Accounts Committee, being listed on their report into protecting the vulnerable during COVID. I've had my fifth COVID (and flu) vaccination.
You were lucky to have such an experienced team looking after you when you had pneumonia, it looks like they knew what to do. I was interested to see what scarred lungs looked like, now I know. I was diagnosed with covid and pneumonia just over 6 weeks ago but felt ill for a few weeks previous to that. I have no idea how long my lungs have been scarred for. I must see if my GP knows.
The x-ray shows the inflammatory stage that worsened to a white fog in both lungs. That causes fluid and scarring of the tiny air sacs (alveoli) in the lungs. In that phase you may find that 2 or 4 litres/minute of oxygen via nasal canula will not improve the blood oxygen (SpO2): you'll need high pressure oxygen (20 to 25 litres / minute) that is warmed and humidified, through a mask. Once you get through that stage, your x-rays will return to black in the lung spaces, but the scarring remains. You would need a CT scan to assess the damage: there was an excellent television programme that showed it in three dimensions. A steriod will probably be prescribed, but if you're on it for very long you will need to be weened off of it. I was on prednisolone for twelve months, and had to take calcium and omprazole to replace the calcium that I was loosing because of it. I lost height too.
The scarring reduces oxygen and carbon dioxide transmission. Sitting quietly, your blood oxygen (SpO2) will improve. An on the ball hospital doctor will get you talking when you are in bed, and watch the SpO2 reading on the monitor over your head: your SpO2 will drop.
As you have been told that you have scarring, make sure that you're listed with your GP as vulnerable to respiratory events, and get listed as vulnerable with your energy provider. If you get breathless when walking, ask about a Blue Badge whether or not you drive.
Hi Paul, I took it for 6yrs and it worked wonders for me. More or less kept the dreaded AF at bay apart from 2 occasions, when I'd had small procedures, one a spinal injection, which started the AF off again but went back into sinus within a couple of weeks.I was monitored closely, 3monthly blood tests, yearly ECO and biannual chest xrays.
Only downside for me was the sun sensitivity.
It stopped working for me unfortunately but kept me out of AF for 6 yrs , which after weighing things up and knowing that I was being monitored so closely, I considered it worthwhile.
I know that others have had problems with it but we're all different aren't we.
I'm pleased to hear it worked for you for 6 years and yes we are all different. I think it is VERY important to be monitored closely and contact your GP at the first sign of trouble on this drug. I suggest anyone taking Amiodarone does this without a doubt.
I hope your afib is still being kept under control.
Unfortunately, despite trying various medications, I've been in permanent AF for 2 and half years. I had a pacemaker fitted 6 weeks ago and am having the AF node ablation next week.
So yes, last resort treatment but hopefully, I'll be able to get on with things after that.
Thanks Paul, feeling very anxious about it all but just want to get back to doing things that I could before this semi uncontrolled AF. For a lot of the time, I can cope with the bouncing heart rate but every now and then it lays me low and theres no telling when that will be.
I'm hoping for more energy and a steady heart ( I know I will technically still be in AF).
My cardiologist says that afterwards, I can do all of the crazy stuff that I enjoy ( was white water rafting down the Payette river in Idaho a few years back, while controlled with amioderone) ,been afraid to do stuff like that with this racing heart🤪
He says just to avoid contact sports like rugby.......well I think I can go with that and just watch my grandkids playing instead 🤣.
Great. Back in the day, my wife and I white water rafted down the Snake River. Neither of us can swim, naturally we were the bow paddlers! I had AF then and didn't have any kind of medication. Best to stay in the raft, as the shore had "bear frequenting area" signs.
We went through a "stopper" and my wife got it full on. She said that she'd never experienced gallons of cold water flowing through her bra before! We must have been paddling furiously, as the guy in charge said "I've water skied behind paddlers like you!"
For me Amiodarone was a bad expensive. After my second ablation I was advised it was the best chance of staying in rhythm and would only be short term, three months. My side effects were the most awful realistic nightmares, a constant nausea and generally feeling ill. I lasted the three months and that ablation lasted almost two years. However I refused it for my next ablation. Everyone is different though and a hard decision to make. Good luck.
You echo the thoughts of others on this thread. It's hard to say if your two years of sinus were a result of the ablation or because of the mix of ablation and Amiodarone. Certainly nausea seems to be a common side effect of the drug. Maybe a 'touch up' to your second ablation might help ? It's worth asking your EP to see if it might work.
Unfortunately had a third failed ablation but eventually had a Pace and Ablate . AV node ablation was nearly a year ago now and has worked a treat and changed my life . Good luck x
Oh Paul how I wish I had never heard of Amioderone. For me it is scarier than coming face to face with Edward Scissor Hands!I was put on it prior to an ablation. In the very short time I was on it, it affected my thyroid, kidneys and liver.
Please think very carefully before you decide.
After 4 years my AF has returned with a vengeance and my Consultant has suggested I go back on it but I have said no.
This is frightening stuff. You say you were only on it a short time but it affected your thyroid / kidneys / liver. I must say that makes me think to stay well clear. The more this thread progresses the more I feel that Dronaderone is a better alternative. Maybe it's worth you discussing this with your cardio ?
I hope your afib get's better and you find a treatment that helps.
Paul unfortunately Amioderone does what it says on the tin. I actually felt better on it but it was toxic for me.Talking to my Consultant, my choices are Cv, Amioderone or ablation.
My question would be will I have a better quality of life if I go back on the Amioderone or do I put up with how the AF makes me feel.
My Consultant is taking my case to his weekly meeting as I do have complex issues so hopefully he will come up with something to help.
I understand - it's a tough call to make deciding the best treatment for afib. It's unlikely a CV will last forever - 50% of people who have one return to afib with it 12 months. I was lucky and had 2 years from my last one. Which ever route you decide to go on I wish you all success.
Dronedarone is the sister drug to amiodarone: it's the same but without the iodine element. That is what kicked off the pulmonary toxicity. I had read the American medical papers on both drugs, and told the hospital staff on the second admission that I must not have amiodarone. More concerned about AF than anything else - if you're unwell it may cause AF - they put me on a saline drip. I could read on the bag that they had added amiodarone. Sure enough, within 48 hours my urine was coffee coloured, a sure sign that my body didn't like amiodarone. I was admitted with one lung just about working, and discharged with two lungs that were just about working.
That was wrong of them to give you Amiodarone when you had asked them not to. Personally I would have followed that one up certainly when it affected your health in that way. It might be worth giving the hospital some feedback so it doesn't happen to other patients.
Not taken it myself,but a close friend has for exactly the same reason.The day she told me she was to take it I suggested she check with her cardiologist as she has underactive thyroid,diabetes and eye problems.She was actually prescribed it by cardia nurse! She did check and was told' its to prepare your heart for the CV' which took 7 months.
I was really worried for her and mentioned my EP who is excellent for 2nd opinion
But she was fine and the CV worked. On no AF.meds now was on bisoprolol 7mg pre cv.
That was last year.
Another thing,she is very trusting of drs,never looks up what tablets are for side effects,does not seek advice from forums.
Not saying that is right as in my opinion and experience ,we do need to keep on the ball and understand our treatment. The old saying ignorance is bliss is perhaps true but not right!
So,that is one story of amiadarone being a useful aide to treatment.
I agree. It's certainly worth asking a medic (about any afib treatments) as it doesn't hurt to ask questions. You can always do some research afterwards to double check their answer. Or of course ask the question on here. It's very rare not to get some useful answers.
Hi Paul. It’s uniquely effective and the most widely prescribed anti-arrhythmic, apparently. I nearly went on it but my ablation beat me to it. At the time, this helped relieve my fears. The internet attracts comments about the worst side effects of drugs, I guess, reasonably so:
"In conclusion, very-low-dose amiodarone displays a low incidence of significant side effects requiring medication discontinuation"
It appears that a low dose is key here. The article states that the the lower doses of 50mg or 100mg have a positive effect on the heart but side effects are kept to a minimum. 200mg being the highest 'low dose' to avoid side effects. It seems in the past people were given 800mg a day - this is likely to cause a bad reaction. It makes me think that a starter dose of 50mg is worth consideration - maybe increasing this to a 100mg if it goes well and my body gets used to it. I certainly wouldn't jump in the deep end and take 800mg as this would be asking for trouble.
I’m with you Paul. I’d be doing the same. I was surprised when I looked into it just how widely prescribed it is - and how very effective. The difficulties with it are caused when it is, for some reason, absorbed excessively by certain key organs along with its very long half life, it seems, lasting in the body for a very long time. I think I’d tread carefully and ask to be monitored, despite the encouraging study
I think it would be very wise to tread carefully and make sure you are monitored on a very regular basis ! I also think it's worth researching about the dose to take - my thoughts are to start small and build up slowly.
it’s an impossible question what works for one is devastating for others but you already know that.. I find seeking reassurance from others just adds to the confusion.
I couldn’t tolerate Sotalol myself ending up in A&E after just 5 days of taking it..it’s all about Quality of life and how your AF affects your life right now .
I keep hearing “the drug of last resort “ what exactly does that mean.. after 2 failed Cardioversion my Cardiologist wants me to try Amiodarone for another Cardioversion but my quality of life is brilliant and have no effects whatsoever from my persistent AF.. I can do everything I want to do I can walk miles without issue and I live a normal healthy life why would I want to risk the clear dangers of such a drug which could cause irreversible damage as others have confirmed ..
Having seen 2 very well respected cardiologists in the past year and being given completely opposing prognosis going forward it basically comes down to us to make that call.
Unless of course your condition and QOL dictates otherwise leaving you less options..
QOL is what any treatment for afib is about. Yours sounds fine at the moment. I know what I would do in your situation but I won't say as I'm not a doctor. I think though your post answers that question. Have a read of Steves (Ppiman) link just above. The 'low dose' option could be worth a try.
Interestingly, I’ve just read that nigh on half of users reported positive experiences with it, which isn’t very different from the beta blocker ratings.
There are some beta blockers that don't suit me - Bisoprolol being one of them at a higher dose. However when you stop taking them I find that within a few days I'm back to normal and no damage has been done. Amiodarone is different in that respect as it can cause permanent damage and has a long half life.
Sure Steve. It's eerie how they have the same rating. This might apply to many med's although anticoagulant's seem fine for most people to take (if not all) and not have many problems with.
I've been on amiodarone for about 18 months now with no side effects so far. I had my third cardioversion a couple of weeks ago and the plan is to check my ECG in a couple of months' time and, if OK, to come off the drug.
Is it effective? I honestly can't say as, so far, I've been asymptomatic when in AF since diagnosis including the first couple of years without the drug. The only thing I can say is that I started on the drug some 6 months before my second cardioversion and four months later I was back in AF according to the ECG being taken to see if I could come off it. my first cardioversion also lasted about 4 months and I wasn't taking it then. Unfortunately, being asymptomatic means that it's difficult to be precise on how long each cardioversion lasted,
Sounds like you don't suffer from side effects but its not keeping you sinus. Rock and a hard place springs to mind. Can I ask Thomas what dose you are taking ? Is it a low dose or higher than 200mg ?
I think that that just about sums it up too. I take 200mg once a day and have done since I started taking it. I was not asked to pre-load with the higher doses at the start of treatment, as most people are, and as directed in the leaflet that comes with the drug. Take care.
It's interesting to learn that the leaflet say's not to 'preload'. 200mg daily (or 3 times a week / also stopping at weekends) seems to the standard for form members taking the drug.
Sorry, we seem to have got our wires crossed a bit. The leaflet in the box, and many of the postees on this site, say that pre-loading is the norm. Usually, it's 600mg a day for the first week, 400mg a day for the second week then a maintenance dose of 200mg thereafter. However, I was not told to do this by the cardiologist who first prescribed it, I was told to simply take one a day (200mg) and that's what I did. I could have queried it in the light of the information in the leaflet and the posts on here, however, despite the fact that I've left several messages with the cardiologist's secretary over the years, I have yet to receive a response to any of them, so it seemed a waste of time.
For interest, the fact that pre-loading is normally recommended and that it stays in your body for quite a while after stopping it suggests that it's a fat-soluble drug.
Thanks for clarifying that. Sorry to hear the cardiologist's secretary doesn't get back to you. I had the same but kept pestering her - I think she thought 'oh no not you again' in the end and eventually and sorted out my question with the cardio.
"I guess that I am kicking Afib down the road for as long as possible to see if a better treatment comes along"
I'm with you on that one - this is why I don't opt in for an ablation right now. Maybe it's the right call or maybe it's the wrong one. Only time will tell.
I would certainly make sure I was checked on a regular basis. Any signs of trouble I would call my GP there and then. As it seems to be working at the moment the saying 'why fix it if it ain't broke' might apply here.
my OH took Amiodarone for some time - 200mg. He became extremely sensitive to the sun, and had corneal deposits. He had an ablation in 2018 (I think) and the following summer he was admitted to hospital due to severe shortness of breath (thank god for his GP being in the ball); they found he was suffering from pneumonia and that the Amiodarone had caused fibrosis. He was in hospital for a couple of weeks with introveinous antibiotics and on oxygen (they stopped the Amiodarone) and then it took several months to get over the pneumonia. I can’t tell you how frightening the whole experience was. He was then deemed CEV in the pandemic due to his lung issues and decided to retire. He had a further, ‘tidy up’ ablation last year, quickly followed by a cardioversion due to his HR going sky high. He is now healthier than he’s been for a long time, but would never entertain the idea of Amiodarone again. We’ve had a very scary and stressful few years - more than once I’ve thought I would be widowed. Although they monitor for thyroid & liver issues, and eye problems, they don’t seem to monitor lungs - I can’t understand why!
Sounds like your OH had a really bad time of it - I'm pleased he is now healthier. 200mg is just inside the low dose rating too. Why they don't monitor lungs evades me ???
Hi Paul, I'm 76 years young and have been on amiodarone for 5 years now, put on it without prior consultation or assent while in the hospital. At my age I have a lot of health issues but who knows what causes them. As long as it stops me from permanent afib it's worth it to me and as long the Dr's keep scheduling tests to see if any issue's related to amiodarone are not present that's good enough for me (although I haven't been to see my primary care Dr. for over a year now) but when I go to the ER and they see I'm on amiodarone they do the necessary tests to insure I'm having no problems from it. My EP say's all you hear about is the negative of this drug but hardly the positive effect it has done for many people with no problems at all. Hope this helps and good luck.
That's great to hear - I'm pleased it is working for you. I think it's very important to have tests as often as you can. The whole issue about taking Amiodarone seems to be like tossing a coin. Some people (like yourself) seem to have great results and for others it causes serious issues. It seems to be one or the other with no inbetween or middleline. Can I ask you two questions. The first is do they test your lungs and what dose do you take ?
Yes they do test the lungs and thyroid as well and other factions. I take 200mg once daily in the AM with food reduced from 400mg within the first month. For what it's worth my EP is Dr. Ronald Lo. I was always leery of taking this medication because of the negative stories I have heard, in fact I fought taking eloquis for months but finally gave in and I'm so glad I did. Have a great day.
Thanks for that information. Another forum member said that lungs were not tested in her case - I think they should be for everyone who takes this med. This is just my view but personally if I started it I would like to begin on the lowest dose (50mg) and build up slowly if there weren't side effects. I feel that the first month starting at 400mg is a risk I would not want to take. However it's worked for you which is really good news.
The way this drug is taken is you are started on a loading dose for a few days or a week or so depending on your Dr. Then it is reduced to 200mg a day with the week-end off. The loading dose gave me a bit of very slow Bradycardia so I reduced it to 300 mg and all fine. Then reduced to 200mg after 6 days. It was very effective for me so I would probably be fine on just 100 × 1 day if ever I had to take it again. A member on here said they took 100 x 3 days a week as a maintenance dose which keeps his/her Afib controlled. Good luck wading through all the info Paul - it is a very thorny subject 🙂
It is indeed a thorny subject ! It's interesting to learn that 100mg 3 times a week helped a member to stay in afib. I'm pleased it worked for you and no side effects. Taking it seems to be luck of the draw with either very good results or very bad.
My understanding of amiodarone is that high doses are used in the beginning because the iodine won't go to the heart first. It's like filling a sink with water, you need it to overflow to get to the heart that is located on the countertop. Then a maintenance dose will keep it overflowing.
Iodine by itself is not toxic for most people in similar amounts to what is in 200mg amiodarone (around 75 mg). For some reason the type of iodine at this level in amiodarone seems to be toxic at least to some people.
Strikes me it has its place for some clients, especially if short term, but use (and maybe dosage level) needs to be reviewed regularly. Seems to be chosen if you have some heart ‘damage’, which I think for me was a slightly enlarged left atrium(very common, I think).
It probably kept me in Sinus Rythm between my CV and the Ablation. I actually felt OK on it, overall, but I’ve always been very wary of it as my consultant referred to it as a “dirty” drug right from the very start of the prescription AND I was some time later informed by an optician, who knew my meds, that he could see crystal formation in my eyes (a common side effect). I mentioned dosage above as one time I requested to lower prescribed dose to see if I still kept in Sinus as I was concerned about side effects. I did keep in Sinus with lower dose and eventually had Ablation. Unfortunately my 2 ablations have only held SR for about 8 months each. I’m lucky that med regime and nature of my AF means life’s very tolerable at BPM 60-80, can exercise reasonably hard without issue and BP stable usually. I get out of breath easier but could be so much worse, as other seem to have. It’s spurred me onto getting fitter and losing 10+kilos too! I’m being passed to new consultant (NHS at LHCH Liverpool-great place!) to possibly have 3rd different type ablation called Vein of Marshall. I did post about this recently and got a couple of bits of useful info. Good luck.
Thanks for your reply - pleased things are going better for you now and well done for the weight loss.
I'm really pleased I started this thread now as I am learning so much from it. I haven't heard of the Vein of Marshall before. Just had a quick Google and will check it out further.
Good to hear. I got a few useful bits of info when I posted about VOM too, but some posters really don't respect the topic too well... I have to push down my Grumpy Old Man and resist negative commenting as it doesn't achieve anything usually:).
I'll post info about it if it seems relevant once I've seen the new Cardiologist at LHCH (Liverpool Heart and Chest Hospital). or after I have a VOM op (fingers crossed). My last Cardiologist has passed me over as he's done a Cryo and a Electrical heat ablation and both only worked for about 8 months. I'm sure that's no reflection on him as Dr Reza Ashrafi was excellent to deal with and I really appreciate him passing me on for another possible different option.. VOM ablation seems to be not well known yet. I'm hoping NHS will allow me at least this one as well and I'll maybe try for a mini-maze too, if research indicates that looks hopeful. Might have to look at private for the Maze...time will tell (and I'd better get better at Investing or I'm defo not able to pay:)).
Looks like after that I'd slip into the ranks of long term Persistent AF clients maintained by medicines. Although I'm definitely lucky in (so far) being comfortably controlled by meds, I really do vastly prefer Sinus rhythm. I'm pretty active and young at heart and only 65 anyway! Take care.
Good luck with mini maze if you have one. The VOM sounds good and worth reading up on. If you do go into persistent afib you'll likely to find your body adusts and symptoms of afib are not felt half as much.
Thank you all for the very informative survey. I will be starting on low dose amiodarone in two weeks and the information and experiences shared, will be invaluable to me. Saul
Good luck when you start - I hope it works for you and will be very interested to hear how you get on. Please let us know when you are taking it. There's a lot of information on this thread about members experiences with the drug - it's worth wading through all the answers to know what to look for when you start.
Like your good self, I would like to stay on the safe side with 50-100mg a day (safe low-dose as per Steve's link). I will be having a mini-maze in two weeks and it;s part of the protocol.
I am paroxysmal AFib and it lately controllable with 100mg Flecainide once a day at about 18:00. This seems to take care of the rhythm at night and daytime, and I start moderate exercise an hour or two after the pill, and it takes care of that also. I am pleasantly surprised by the regimen as I had some uncomfortable moments with neighbours, and I would have gone into AFib typically.
This time, all I felt were a few skipped beats as the adrenalin rose, and that was that. Again, thanks for starting the conversation. Tons of good stuff here !
First of all good luck with mini maze. I agree that Steves link was very helpful and for me the starting dose of 50 - 100mg is the one I would aim for. I also agree that members contributions to this thread have helped me to learn about options to treat afib that I haven't heard of before. Thanks to all.
I’ve been in permanent AF for nearly two years and only recently got in to see a cardiologist.
I’ve been on Amiodarone for three weeks and have been told it’s to aid a CV that’s due soon, also that I will be on it for six month only.
I haven’t had any naughty side effects up to now. I’m nearly 76. I have angina too.
my sister has been on it for twenty years plus and apart from skin problems related to sunshine she’s been like a new person and could walk 8-10 miles at 80!😳
I hope you find the correct solutions for yourself. It’s all a bit scary I know. I’m worrying about the CV coming up and the angiogram procedure later on.
As I keep saying to my siblings “ keep smiling.”stay as positive as you can. Lots of folk do very well after treatment.
Your sister is doing amazing walking 8 - 10 miles at 80. Puts me in the shade and I'm younger. 20 years on it is another success story.
Please don't worry about the CV. I have had a few and for me it was a walk in the park. I worried about the first one but there was no need. You are 'put under' and won't know anything about it. 10 minutes later you wake up and a nurse is with you and brings you a nice cup of tea.
Paul
hi Paul. Some 5 years ago I took Amiodarone for about a year for intractable AF. It did keep me in sinus rhythm very satisfactorily. I worried about the side effects but as long as you have regular blood tests taken and check your eyes with an optician each year etc. then I think there have been some unjustified scare stories. I stopped because I have some fibrosis of the lung and my respiratory consultant advised me not to take Amiodarone as it can cause fibrosis of the lung. Sometimes AF can cause such reduction in quality of life that the decision to take the drug is more straightforward. I hope you get respite from AF soon.
Thanks for your reply. I'm pleased it worked for you for 12 months - it does sound very effective. I guess you won't ever know if the fibrosis was caused by Amiodarone or not. What shame that some suffer from these side effects when the drug seems to keep people in sinus. Wouldn't it be great if these were not an issue and taking it just dealt with the afib. I think everyone on the forum would be on it. Maybe in the future a med will become available that does just this (fingers crossed).
Hi, I took for 3 months following cardioversion instead of before as a "slot' came up for CV. I can only say I didnt like being on it because of the daily application of factor 50. My CV was successful and the Amiodarone helped keep me in sinus rythmm but Iater learned on a second admission to hospital it had affected my thyroid but to me I hadnt noticed. I was told they wouldnt give me Amiodarone because of the thyroid thing but upped my Bisoprolol instead.
The thyroid does seem to be one place Amiodrone attacks. Thyroid problems can also lead to afib. I hope Bisoprolol works for you and is a better treatment.
So much info in this thread. Haven’t read all the way through, but will. My EP asked me to try it last summer, for tachycardia. After reading an article from the European Society of Cardiology and looking over their summary of side effects and risks, I opted not to try it.
I’ve been on dronedarone since last spring, it wasn’t working well over the summer, hence the suggestion to switch. But, now it is working well. Go figure. One of the drug info sites mentioned that it’s far more effective if taken with a bit of fat! So lightly buttered toast for breakfast seems to have done the trick.
Thanks for posting that link - very useful and worth reading.
"estimated elimination half-life of 30–180"
Up to 6 months half life - that's a very long time to still be in your system.
"A standard daily maintenance dose of 200 mg of amiodarone releases 75 mg of organic iodine. It is important to stress that normal daily requirement of iodine is 0.2 to 0.8 mg - more than 100 times lower that what is delivered with amiodarone"
That's on a (fairly) low dose !
You wrote
"One of the drug info sites mentioned that it’s far more effective if taken with a bit of fat! So lightly buttered toast for breakfast seems to have done the trick"
I had Amiodarone for a while for AF because of dangerous side effects from all the other anti-arrhythmic drugs. The rationale was that, because I was due to have an ablation in a few months, I could tolerate the Amiodarone for a short time and 'get away with it' before the Amiodarone side effects started to kick in. However, it did not work at the normal dose, and I was in AF every day. So my cardio reluctantly authorized double dose while awaiting the ablation because I had run out of options. So we did that. For one month, no AF, I slept beautifully, thought it was problem solved. This would tide me over till ablation. But then, I noticed weird, big, misty haloes around bright lights and could not drive at night - it was like tripping in the middle of a Christmas lantern parade! My balance went weird and I was falling forward and uncoordinated in all my movements, which made me drop and break things, ruin hand writing, I could not do any fine work, and my mood became unstable. I felt like a bipolar with parkinson's disease, whereas my normal disposition is very steady and consistent and I have an athlete's coordination. Evidently my nervous system was being poisoned.
It turned out that I was being poisoned by the high dose of Amiodarone and had to go off it. It has a long lasting effect, hangs around in the body, and it took 3 full months before my vision began to clear and my mood and coordination started to return to normal. On the normal dose, people might not get these symptoms, but it shows the degree of toxicity this medicine has. If you can tolerate it for a SHORT while before an ablation, that would probably be OK. Unfortunately for me it did not keep me in sinus rhythm at the normal dose. Some people are given a second med to help out, but those alternatives like beta blockers had also become dangerously toxic to me. So I had to go back on Flecainide (which I'd gone off earlier because of toxicity) and gut it out until the ablation. It's now 3 months since I had the ablation - too soon to really tell but it seems to have gone well, and I'm slowly, carefully weaning off the Flecainide with a plan to become medication-free in a couple of months.
Here's an important extra bit of information that even my doctors did not know. After the ablation I was put on Colchicine for the inflammation and Diltiazem to help with heart rate. BUT the weird misty lights were not going away, and my faeces became pale (sign of liver in trouble) and liver enzymes were elevated. I researched and discovered that all three meds: Colchicine, Diltiazem and Amiodarone, interact adversely with each other to impact the liver, which can then not do its job properly, leading to build up of toxicity. So this was happening with the residual Amiodarone in my system, even though I was not taking it any more!
The next important discovery was that black pepper in the diet inhibits the ability of the liver to metabolize drugs! I normally eat quite a lot of black pepper every day, so I stopped completely. Evidently the slowed clearance through the liver was causing the drugs to accumulate and interact with each other to produce symptoms. I also went off Colchicine and Diltiazem and the drug toxicity symptoms began to decrease quite quickly. My liver, vision and nervous system all thanked me for it!
Every one and every case is unique of course, and so you and your doctors have to work out what's best for you. However I hope this bit of extra information might help you along your journey. All the best!
Very useful post thanks. Amiodarone does have a long half life of up to 6 months. So even when you stop taking it the damage it can do carries on for sometime (in your case 3 months). For me there's no way I would risk doubling the dose - I would prefer afib to the harm it could do. Indeed every case is unique and some manage very well but many don't. One thing is for sure - it can certainly help keep you in sinus. It was 1961 when it was discovered and licensed in the USA around the mid 80s. They really didn't know to much about it then and people were given about 800mg a day. That's asking for trouble !
Once again thanks for your detailed post about your experience. I'm off to bed now as it's past my bedtime and need some sleep (based in the UK).
Yes it is prescribed often. I can understand some people would want it banned but it could still have role in helping some with afib. I think regular testing for side effects is key here -at the first sign of trouble it could then be discontinued. Right I'm turning off now for the night as the land of nod is calling.
I have been on Amiodarone a couple of times before and after my for my ablation procedure and it worked wonders by keeping my heart rate at a normal pace. Just note that my cardiologist does not recommend it for long term as it does things to your other organs in your body. I recommend Amiodarone. Just be careful and listen to your doctor.
Thanks for that. I think you are right - it's best taken for short term use. Your answer makes me think about staying on Sotalol (long term) but still keeping Amiodarone in the arsenal as a back up should the need arise.
Thanks for replying. I think your point of being a last resort drug is very valid. Your input is helpful to myself and will be for other forum members.
Amioderone Gave Me Peripheral Neuropathy and my feet and hands get numb but tingle and feel like they are on fire. Do Not & I repeat Do Not Take Amioderone. Take TIKOSYN or generic Dofetide. Keeps my heartbeat regular - normal and strong.
AMIODERONE SHOULD BE ILLEGAL!!! I can't believe they still use it.
Tikosyn is not licenced in the UK - only in the USA I think. It maybe worth USA forum members doing a quick Google and asking their doctor about it. You seem to have very strong views about not taking Amioderone which I fully respect.
I tend to agree - afib would be the lesser of two evils. I'm sorry to hear that your client's husband died to lung problems likely caused by Amioderone. These sort of post's really make me question about starting it - I'm starting to come to a conclusion about taking Amioderone or not - I'll let you guess what that is !
Until recently,I was on a very low dose of Sotalol that controlled my AF perfectly well, so I was having just one episode in several months.In April,I had Covid and my AF went into overdrive, having 3 or 4 episodes a week.
Sotalol was no longer effective, so just 3weeks ago I was put onto Amiodarone 200mg twice daily for 1 month, dropping to 200mg once daily after that.
I was not advised of all the side effects mentioned here, which concerns me a lot.
There has been no reduction at all in the frequency or length of my AF episodes three weeks after taking 400mg a day, so I am not sure what will happen when I drop to 200mg.
I would have avoided Amiodarone had I known about the side-effects. Now that it seems it doesn't work for me, I will be looking for other options when I can get an appointment with my EP.
My advice, such as it is, is to explore all the other available options so that you can make an informed decision.
I think exploring other options is also a good idea. Taking 400mg of Amiodarone a day is certainly not a decision to be taken lightly. It seems to work for many controlling afib but the possible side effects need careful consideration. It reminds me of the Scales of Justice at the Old Bailey court. I think it's a real balancing act and all patients should be well informed in order to decide the best course of action to embark on.
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