Well good people, just want to share my ordeal with taking amiodarone for five years. Just saw my EP Monday and the result of a chest xray was "minimal fibrosis", a noted side effect of this evil drug. I am now going to have a cat scan of chest soon. My EP is not concerned but I sure am. Fibrosis is untreatable and progresses and leads to death and the irony is I was only told I was put on amiodarone after a couple of days of being started on it while in the Hospital for something else. This is one Nasty drug. The Ep said I could cut back to 100mg a day and see how it works he even said I could come off of it completely but I would be in constant afib. I mentioned droneadrone and he said it wouldn't work for me. Well here's another victims story you can add to the list of many that amioadrone has done it's damage to. I hope this helps some of you that have been asked or put on it recently.
Amiodarone: Well good people, just want... - Atrial Fibrillati...
Amiodarone
This is a sad story and it is unacceptable that this potential side effect was not anticipated. I always understood that Amiodarone was a short term solution.
I was put on Amiodarone many years ago but had bad side effects which because of my bad memory I cannot recall in detail now. All I remember is I felt awful. I asked to be returned to Flecainide which I had previously taken I have taken Flecainide ever since.
Is it your EP who said Dromadone was not suitable for you? I f not try and get an appointment with your EP to discuss.
Hope you find a way round this.
Pete
Yes, it was EP said droneadrone would not help me but he never mentioned flecainide. Funny thing is I've been pleading for a long, long time for him to take me off of amiodarone and the answer was always NO. Now he says I can stop it if I want after catscan next week. I'm very glad to hear you stopped taking it and hope all is well with you. Have a Wonderful Day.
You could have a case there. I dont know if you'd consider it. In the UK - if you've a paper trail - I'd be looking into it. Not that it changes the fibrosis of course. So sorry you're going through this!
Thank You for Kind words. I'm 77 years old now and could've sued the VA Hospital for something in 1995 and was in all the newspapers which I was one involved but I don't want any problems just to live to 100 years old. Money isn't everything but Peace is. Thank You and Have a Super Day!
When I was diagnosed with afib the cardiologist prescribed amidiarone. Before taking it I went on line and saw the possible side effect and so refused to take it. I then went on flacainide but it did not agree with me. On these forums I saw that people used PIP and I switched to 100m flacainide whenever afib starts and it stops after a couple of hours. I have learned to be my own doctor and not always follow what the doctor says but look for alternatives. Ask the doctor to explain why Dromadone is not for you or else see another doctor
I will do that. Thank You.
Seriously, get a second opinion from someone else. You will feel happier and you might have other options.
I will do that if necessary as I just got my appointment for cat scan on the 28th and if my EP gives me any trouble, which he won't though. Thank You
He just doesn't seem to have given you much choice or input. My cardiologist was like that. He ended up saying he didn't need to see me anymore despite me being in permanent AF. I was relieved as I didn't like him. He basically told me all treatments for rate control (beta blockers or calcium channel blockers) were the same, all brands were the same etc. They are not of couse.
I was told that Amiodarone would be the only option left for me to try, following a failed ablation. Nothing else has kept me in sinus rhythm. Even if I had a cardioversion it would entail weeks of Amiodarone before the procedure - but years after!
I decided just to go along with the suggested rate control, with a back-up of pace & ablate if that doesn’t work. Sometimes I have wondered, as the lure of NSR is very strong.
I know that some people take it with very few problems, but it’s the idea of lung or eye problems that puts me off. Persistent AFib with the rate under control is ok - not perfect, but ok.
It works so, so for me every 2 to 3 days in afib then 24 hours and back to sinus rhythm, its a shame to because after losing 20 lbs. it was working much better, sometimes 10 days in NSR than afib for 24 hrs. and back in NSR . Are you taking amiodarone now?
No, I’m just on 5mg Bisoprolol plus apixaban. I am in A Fib all the time - almost a year now. Though I was only diagnosed in early 2022, with episodes that lasted about a week, with three weeks in NSR in between. It must have been lurking for a long time undetected, despite me being concerned due to a strong family history. Never got caught on ECG, and it took an Apple Watch to detect it.
At ablation they found too much fibrosis in the left atrium to recommend further ablations. I was taken aback, as up to last Autumn I was still getting a few clear weeks each time. Dronedarone failed to keep me in NSR, and Flecainide didn’t work for me either. First time I used it as a PIP I reverted after two days. Next time it didn’t work and I’ve remained in AFib.
The EP didn’t recommend years on Amiodarone, but a rate control strategy instead. I did have the option of trying it, but the dronedarone had affected my liver enzymes and I reckoned that Amiodarone might not be wise as it has more side effects.
I would opt for staying in AF with good rate control but not an option for me as I am unable to have even moderate doses of rate control due to heart block( high end first degree). Left to it’s own devices my HR is around 140, 130 if on the higher dose of sotolol. Hence the limited choices. X
I’m beginning to think that I’m lucky that they are happy with the heart rate etc. I was really upset at first, but in some ways it’s more settled now. My heart rate used to bounce up to 170 when I went into AFib. The one time that Flecainide worked - after two days - my HR plummeted to low thirties and my Kardia said ‘unclassified’. I felt rubbish for one day too.
Since the ablation it’s no longer going as low, and the Bisoprolol keeps it mainly under control. Though it can go to 120+ on an uphill walk.
It sounds like things have sorted themselves out for you which is brilliant news. I would be happy ( well, maybe satisfied is a better word) to stay in AF at that rate. I really wish it were an option for myself. X
They want me to have a converion , when they stop your heart and restart it again! Some people have to have it twice before it would work! HAVE you had anything like this?
It was suggested after I was first diagnosed, but at that point I went back into rhythm. Then when I was on Flecainide ‘pill in the pocket’ I was told to attend A&E for a cardioversion if it didn’t revert in 6 hours. I did that, but they just gave me more Flecainide and sent me home when the rate was below 100 bpm. I didn’t regain sinus rhythm that time.
Was already on the waiting list for an ablation, so had that a few weeks later. They tried to cardiovert me just prior to the ablation, then did it successfully at the end. Sadly it only lasted two days.
At the three month check I was told that there is too much fibrosis for another ablation. If I were to have a cardioversion then I would have to take Amiodarone before it, then for years after. While I would have considered that drug short term, years of it didn’t sound great. The EP thought the same.
So, it’s rate control only. Luckily I don’t feel palpitations much. It’s mainly tiredness and heavy feeling in my legs walking uphill.
If the mini maze was available where I live, I suppose that could be an option. At the moment if the rate control isn’t considered ok, my only option is pace & ablate. However, I seem to be doing ok.
Just curious Gumbie cat. Did your RP explain why you had too much fibrosis? In a recent letter to my GP following a private appointment to discuss my future treatment, I read that I had extensive and severe scarring in left atria so unable to have more ablations. No suggestion of what has caused it. 20 years of AF maybe? Something else? It makes no difference to the outcome of course but it would be good to know.
All the Best
Jane
No explanation given. Mentioned that if they had caught it ten years earlier there might have been a chance. (I did try, but it never appeared on ECG.) I did wonder if the Covid I had just before the never-ending episode escalated things.
I tried to read around it a little, and saw mention of some genetic types of AFib going very rapidly to extensive fibrosis over a short period of time. This condition is written through my family like a stick of Blackpool Rock. I’m glad that it was eventually diagnosed before a stroke - my sisters having had strokes in their mid sixties as the first sign.
I’m taking part in a study, so there was also a cardiac MRI showing the fibrosis To say I was disappointed is an understatement. However, they are looking at being able to quantify different types of AF, including those which do or do not respond to treatments. In some ways it means I have avoided procedures that would never have worked.
Thanks for replying and your reply is very interesting to me. Like you I probably had AF for 5 to 10 years before diagnosis. I was on the way to a stroke as had had 3 TIA’s and because I was only 55 I still had to fight my GP for anticoagulants even though the stroke consultation had recommended them. I wasn’t put on any meds to stop the arrhythmia or decrease heart rate. It took a complete move of areas a new GP who referred me to s cardiologist and later an EP . Consequences, I had had rampant AF for at least 10 years before any one made any attempt to modify the effects. It does sound as though untreated AF at higher heart rates could be one possible cause of fibrosis Also interesting to consider the genetic link. I think my maternal grandma and my father probably had arrhythmias one one sort or another.
I will be interested to hear the results of the study you are in.
So glad you are on even keel right now. X
Thank you! I was 67 when diagnosed last year. My watch did it, and my heart rate was going up to 170 - while I was fairly oblivious! I did have a retinal vein occlusion a few years ago, and remember being in tears at GP saying that I felt like a ticking time bomb. Was always told that my HR was slow and steady, and at that stage under 65 would not be anticoagulated as my BP is low end of normal, cholesterol and blood sugar fine etc. I nearly grabbed the apixaban out of their hands last year. 😂
Sorry to hear about this.
After a scan earlier this year my GP asked me if I knew that I had scarring on my lungs, well no I didn't. Nothing has been said about it since.
I'm guessing that was as a result of my taking Amiodarone pre my first two ablations, it damaged my thyroid too - made it underactive and I'll now have to take medication for life to correct that.
It didn't keep me out of AF either. I detest that drug.
Jean
I totally agree with you about hating amiodarone same as I do. My EP said I could stop it but I would be in constant afib and he flat out said droneadrone would not help me. Cat scan next week so all I can do is wait until then. If I may ask what are you taking now as I know you're in constant afib as I may be shortly. Thank You
I was taking Bisoprolol, which was working quite well at controlling my heart, but unfortunately it was making my legs ache from just below the knees down. Have now been advised to stop it for a few days and then report back what my blood pressure is when I'm phoned next Monday.
We'll just pray everything is back to normal.
My heart doctor would not put me on AMIODARONE because I am on thyroid meds and he said I could not take it ! He wants me to get a conversion because I am in AFIB most of the time, I get a day here and there without it , but not much! I AM on SOTALOL, I TAKE 40mg in the morning and 40 at night! I tired 80mg in moring and 80 at night but I was short of breath with the higher dose! This helps somewhat!
Hi Bailey, I've just been put on Amiodarone for three weeks and have long standing hypothyroidism. I'm post mini maze and it seems to be part of the standard post treatment. I'm worried. I have taken it and it's true am in NSR but unhappy about what it will be doing to my thyroid levels. I'm on a NDT Armour. I've been very stable on it for years. From what I can find out it lowers thyroid hormone conversion rates. This is what the beta blockers do too. I'm about to contact my old Endo to ask him. I do not tolerate beta blockers as actually my heart rate increases on them. They actually put me on it whilst in hospital without discussion.. When I left I was then given a booklet on it and I have to be honest I was poorly still from the op. I queried it though and was told that it was the best option and only short term. I mentioned my Hypothyroidism. I didn't realise till today that it has a half shelf life of 80days in the body.
Ive also had a headache with it... Thought it was due to not drinking enough.
Sorry for pitching into this post.
I will be following this up at my next appointment which is meant to be next week but haven't heard anything.
No doubt it's a potent drug,like you Jean my thyroid went through the floor,none of the consultants or doctors actually admitted amioderone had caused the thyroid drop ,but hey ho I came of it for digoxin and finally got back on track. Any body reading this needs to push the medics and ask do I really need to be on this drug,don't be left to your own devices ,this is one of the problems with after care after cardioversions and ablations, sometimes as I was your just forgotten about .
Yes, I think GP's and all medics forget about us as soon as we walk out of the room. I have a lovely lady doctor who doesn't do that. She once asked me how I was keeping when I bumped into her while in Sainsburys. I didn't think it appropriate to start telling her all my ailments so smiled and said I was fine.
Yes, there's not a lot of ongoing care after cardioversions or ablations.
I had my second cardioversion with amiodorone before and after and like you it didn't keep me in NSR for any longer than just the cardioversions on their own. My first cardioversion kept me in NSR for nigh on 12 months and my 3rd for 15 months. The second with amiodorone lasted less than 6 months. I too had a slight change in thyroid shown in the last blood test I had but that was when I finished taking the amiodorone and at my next blood test it was back down in the normal range again. I had no other problems with amiodorone that I know of but wouldn't want to take it long term knowing that in the short time I took it it caused changes.
As I have been on amiodarone for 5 years and the whole time pleading with my EP to take me off of it but he said NO up until last visit then he said OK. Something doesn't add up here. He said if I stopped I would be in constant afib but rather that then something that might kill me. Thank You for your reply. Have a Good Day.
I was diagnosed with persistent Afib and now because I missed out on an ablation during the pandemic I am in permanent Afib. I only take anticoagulants because I am in low rate Afib and any medication to control my heart rate takes it way too low - as low as 36, I tried about 6 different types of rate control medicatio, beta blockers, calcium channel blockers and a mix of a few over 9 months but all made me feel worse than the Afib alone.
I too have scarring on my lungs from pneumonia but it is nothing worse than that and does not cause me any problems.
If he said that and had previously insisted you continue to take the drug that 'might kill you' that's appalling.
Hi singwell, My EPs. response was "I'm not worried at all and if I wanted to I could stop taking amiodarone or cut it back to 100mg but I would be in constant afib if I did"). Thank You
They started me on amiodorone after a successful cardioversion. The loading dose was terrible. I stayed on it and wafarin for two years and found that I had pulmonary fibrosis, thyroid disease and the usual side effects for that terrible drug. I left the private practice and went to a VA dr. He told me to stop taking it and all the metropolol, too. It took 5 months to get it out of my system. He ordered a portable telemetry monitor, I think its called a Holter monitor, for a period of 30 days and stayed in normal sinus rythym for a period of 5 years. A year ago, I was in a serious accided broken hip, femur fracture, surgery. rehab. I went back in afib, tachycardia, and while in the hospital, I was prescribed Tikosyn. It acted within 12 hours and I only have infrequent episodes of afib. You are required to take it in the hospital and be observed for five days. If you decide to come off it, you have to stay in the hospital. You can't miss a dose. 250 or 500 micrograms every 12 hrs. It is not without side effects for some people, I tolerated it well. Still suffering from the effects of amioderone and my injuries. I am an 82 year old male. I never smoked. My dr. has retired and I'm left to see the hospitalist on call. Living on my own and driving.
Look into Tikosyn.
Jim
I was on the Tikosyn (dofetelide) trial study before it was approved for use and it worked great for 25 years but then started to have a lot of break through episodes so while I was in the hospital for something other than afib I was unknowingly put on amiodarone. The one thing that was bothersome about Tikosyn is it interacts with a lot of other meds. The VA is the one that's been monitoring me. My EP still says he's not worried. Thank You for your reply.
I have scarring on my lungs but I have never taken Amiodarone. I believe it was caused by pneumonia and undiagnosed asthma. I was alarmed as well but it is not the same as fibrosis that progresses.
That is not good and I’m sorry you have this problem. I have done a bit of research on on lung fibrosis caused by medication as opposed to idiopathic pulmonary fibrosis. It seems that the former is usually reversible on withdrawal of the drug and possibly with steroid treatment so I hope that is the case with yourself. If I can find the link again I will post it.
However, that said, it is not good that this has been a side effect for you. I am in the process of trying to decide whether to have a pace and ablate or opt to try amiodorone. I am very worried about the amiodorone option but my EP’s recommendation is to at least try the amiodorone first as pace and ablate is final and not without some inconveniences. At the moment my gut is telling me to wait till sotolol is totally not working then go onto amiodorone while on waiting list for P and A. I’m not even sure that this is an option !
I am finding it so hard to make up my mind.
Can I ask if you had any physical symptoms of the fibrosis or was it found on a routine x Ray?
Also, did you have any other side effects? Thyroid or sun sensitivity?
Thank you for posting. Although it is not what Zi want to hear, all information is welcome. X
Thank You for your encouraging words about possibly being reversable. I would encourage you to seek out any other medication that would help you rather than amiodarone. I have numbness in fingers, my hands shake as though I'm terrified, tired all of the time, just not myself. I was on Tikosyn (Dofetilide) for 25 years and it was great, than it started to not work as well as it did, hence amiodarone. Fibrosis was on a routine x-ray at my new primary Drs. request. Wishing the Very Best to You. Have a Great Day. Thank You Again.
That's not good! I believe there are alternatives for most drugs so stand your ground and tell him/her you wish to try an alternative and good luck.
At the time I was prescribed Amiodarone the cardiologist said stomach, bowel and bladder should be monitored regularly (by my GP) as the drug could be toxic. He also hinted that although it was a good drug for controlling AFib it may shorten lifespan . We discussed the question of living longer in poor health -v- having a shorter but good quality of life. I opted for the latter. However after weeks of feeling terrible and with persistent abdominal pain - and factoring in the general attitude in the NHS to this ‘common condition of the elderly’ and the unlikely scenario of my GP sending me for regular scans given the NHS waiting lists for scanning for more pressing matters, I changed my mind and stopped taking it. In retrospect, rightly or wrongly, I felt I had unknowingly become part of a real life drug trial which I ‘may’ have stayed on if my GP surgery were more engaged and proactive and the NHS generally was fit for purpose.
Your EP sounds a bundle of laughs. Keep banging on the door , there is better treatment out there . Mine said I could have an ablation but at 74 I opted meds to control my rate . No sinus rhythm for me but generally getting on with life.?it has changed but everything slows down as we age x
I don’t respond well to meds and the only way I’ve had relief is through a Cardioversion when I felt wonderful. Sadly I reverted to AFib after too much exertion so will hopefully be offered another soon.
So sorry to hear of your experiences with this ďrug. After having the same problems as yourself with AF and going through all the available beta blockers over time, unable to take rhythm drugs because of other heart issues, my GP wanted me to take amiodarone. Luckily over time I had read up every available thing on AF and had joined this great forum and learnt so much about AF and drugs and there effects so that I opted for Pace and Ablate. I had it done last ýear and have been AF free and drug free ever since. If your type of AF is curable by this method and you are offered it I'd recommend it.
Pace and ablate. I’m happy to hear it’s good for you. I’ve had three ablations and EP says next option is pace and ablate. Scares me
What drugs did you take that help you? Now you say you are taking no pills at all?
Nothing for AF but of course anticoagulant Apixaban and Ramipril for high blood pressure.
I have been offered it but am leery, this might change though after cat scan next week.
Thankyou for responding and I agree that if one can avoid a lifetime of pill popping it would be a better quality of life. I am hoping for another Cardioversion - too much exertion overcame my first Cardioversion but I’ve learned my lesson!
When I had my TIA nearly 20 years ago the hospital found my AF was in need of control and recommended Amiodarone. However I read up everything I could about this drug and its horrendous side effects and decided I wanted to avoid it at all costs. Even my GP confirmed it caused Thyroid disease.
After a long research I found Fleccanide was preferred in the States and told my consultant I didn’t want to take Amiodarone. However he was not willing to offer Fleccanide ….. too expensive? So I asked my GP for a second opinion at a heart specialist hospital. I researched their specialist surgeon on my particular problem and when I met him he actually recommended I take Fleccanide. I was and still am now the patient under that surgeon and am thankful for his honesty.
Too often price comes into the decision. You should ask for better.
Always read everything before accepting, we only have one body and must try not to poison it.
.
Thank you for sharing. I’m 44 and finished Amiodarone after a 6 month dosage recently and I’m worried about this especially bc my family is prone to COPD and lung problems even for those who don’t smoke. I think I’ll be requesting a scan at my next follow up appointment.
I hope this stays mild for you!
Very sorry to hear this. And especially to hear of the insensitive response from your EP. When I took Amiodarone, thankfully for only about five months or so, during which I had some kind of gasping for breath incident at 4 a.m. for which I had to be taken into hospital (can't possibly be the Amiodarone they said, but I never had anything like it before or after!).. it made me feel worse than at any time in my life. I was delighted to get off it and back on to a simple beta blocker, though the consultant was very sniffy about it, with a 'suit yourself' attitude!
I hope that your fibrosis will at least not get any worse and that when you are finally free of the amiodarone, which has a half life of many, many months, that you will be ok.
Does the beta blocker help on your AFIB? What is the drug you take?
I was prescribed amiodarone after a stroke in 2020, but I had been taking Sotalol (80mg) ever since 1995 when I had my first serious attack of paroxysmal AF which put me in hospital for almost a week. After the stroke (I had never been prescribed an effective anti coagulant... just an aspirin a day) the cardiologist put me on amiodarone but also told me I was in permanent AF, something I was unaware of. When amiodarone made me so ill, he agreed I should return to Sotalol.
Sotalol is one of the oldest but probably safest of the cardiac specific beta blockers (but far less specific than others now such as bisoprolol or nebivolol ) but although there are initial unpleasant symptoms when you first take it, once you become accustomed it is fine. I am very lucky that it has enabled me to lead a fairly normal life even after the stroke and I very rarely notice or suffer from the symptoms of AF apart from struggling when walking up hill or making a significant physical effort. But I am 77 and can't get used to the idea and still expect to be able to do things that I did at 55 or 65.
Good luck in finding something suitable to replace Amiodarone and that the fibrosis can be halted now you are no longer taking it.
Thank You so much. My EP's attitude was much like yours was. I told him I wanted a cat scan and he said whatever you want and I want off of this terrible drug and he said OK after years of asking him to take me off of it and he saying NO. I agreed to stay on it until cat scan next week. Thanks again, I hope you're getting along alright though.
It's a sad and worrying story you have to tell but let's hope when it is resolved, it all works out better than you think it might. From what I have read, it does seem seems likely that the somee of these conditions can be treated - at least from online information, for example, here's a quotation that is typical of others:
"Fortunately, the response to the exclusion of amiodarone from the treatment regimen and the administration of systemic corticosteroids was a very good one."
(ncbi.nlm.nih.gov/pmc/articl...
Reading this and similar reports, it seems that fully-fledged fibrosis as a side effect from amiodarone treatment is very rare. Also, it seems that you should have been properly assessed with such as a check X-ray before you began treatment. Did this happen, I wonder?
In the UK, at least, amiodarone is reserved for use either short-term, such as before an ablation, or when other anti-arrhythmic drugs fail or are unsuitable, and even then only in low doses of 200mg, and with monitoring.
I was about to be given this drug in 2019, but my ablation came first; I was unable to take other anti-arrhythmic drugs such as flecainide since, for me, these would have been potentially more dangerous than amiodarone (the saying, "between a rock and a hard place" came into my mind). I hadn't appreciated that heart arrhythmias can be very tough to treat and that whichever drug we end up taking, it will not be risk free.
I do hope that you recover. My daughter-in-law's brother has developed some lung scarring following an otherwise mild infection with covid. He remains completely well, thankfully, and has been told the outlook is good.
Steve.
Your quoted fibrosis treatment by "systemic corticosteroids" interests me as when I was researching any possible influences in the aetiology of my pAF, I encountered research articles showing that corticosteroids can actually cause AF. In fact I undertook a course of corticosteroids as part of the conservative treatment of the unexplained bilateral subdural haematomas I experienced. Even though there was a gap of a couple of years between the subdural haematomas and my first awareness of AF, I cannot rule out the long term after effects of those corticosteroids in the aetiology of my pAF.
So if your research is true, a patient with fibrosis is caught between a rock and a hard place (not that this is unusual). Difficult.
But let's hope kocoach soon gets better news, as you and all of us hope.
Bob.
I wonder if the steroids did cause it? I expect it’s very likely and they might also have indirectly done so as they have a range of side effects including water retention. A major problem with corticosteroids seems to be that the body slowly shuts down its own natural production of cortisol and other hormones and they only equally slowly return to normal as the steroid is tapered. It must surely be guesswork to keep the balance throughout the tapering. And yet they are an absolute mainstay of treatment for so many ills.
Steve
Hi Steve, I was in the Hospital at the time for another condition and I'm sure they did x-ray although I was not asked or informed that I was being switched from dofetelide to amiodarone until the next day when the cardiologist informed me that I was now on amiodarone, I asked him how he could this and if he consulted with my EP at the Veterans Hospital and he said yes he did and they agreed that amiodarone would best for me. I had x-rays done a month ago and nothing at all showed up and again 2 weeks ago x-rays and there it was, minimal fibrosis. I'm hoping we caught it in time. My EP told me just a couple of days age he's not worried whatsoever. Go figure. Thank for the information on fibrosis and reversal. Have a Wonderful Day!
I was on Amioderone for a few months then I was swapped to Digoxin, one professor was not too happy when he had seen I was on Amioderone......Although I have afib all the time I do not feel it
Unfortunately I feel it a good portion of the time that's why my EP was trying to find something that would limit episodes which he may have but not without consequence's. Thank You for response.
I took Amiodarone for 2 years came off after my Mitral Valve replacement. Even though I had regular blood tests within 2 months I had a stroke caused by an extremely high overactive Thyroid.
Amiodarone did keep me in NSR but the risks are there
I am sure that your fibrosis will not progress once you have stopped taking Amiodarone. As for myself I have beeen on Dronedarone for five years for PAF which started in 2003. The drug has helped me considerably although I do now have occasional breakthroughs with a duration of up to six hours once or twice a month. I have sofar had no side effects and will therefore continue on this medication.
I am very, very surprised that your Doctor does not let you try Dronedarone instead of Amiodarone to see how it affects your PAF. Perhaps you will do very well on it perhaps not but I cannot understand why you cannot have a trial period as you obviously may have serious side effects from Amiodarone? Wishing you luck with getting the right medication for your condition.
There are some really nasty side effects of dronedarone particularly in certain older groups, such as sudden death therefore it is prescribed very cautiously, apparently.
So sorry to hear your story , I was put on the dreaded drug but on researching it stopped taking it !!! It should be taken off the market altogether
There are loads more meds that can be taken
Hope you get sorted , I am a 74 year old lady with permanent AFib and just take Diltiazim , Telmistartan and Benzofluoride for Blood pressure and Apixaban which is a must
Which meds can be taken instead?? I have tried flecainide, beta blockers, digoxin, dronedarone, calcium channel blockers and many combos of these. Hence now on amiodarone after three failed ablations. I was into the stage of having cardioversions as often as every 18 days for fast Afib. I've been told there are no other drugs left to try.
This is my position exactly. Amiodorone or pace and ablate. My EP who I do trust, favours at least trying amiodorone first. I am very scared and truly do not know what to do. I am considering a zoom appointment with York cardiology’s Sanjay Gupta just for another valued opinion. The trouble is that at the end of the day we are on our own with this. X
I don't think Dr Gupta is a electrocardiologist. Could you go to one of the top heart hospitals like Papworth or see one of their cardiologists privately? Good luck
I live in Wales and so can’t go to England unless I go privately. However, since it would just be for an opinion on amiodorone versus P and A, I guess I could do that. My EP. Doesn’t think I should opt for P and A unless is the absolute resort and in theory I totally agree. It is the amiodorone that complicates things! X
Amiodarone sure is scary. That's why I'm going for another ablation as it is affecting my eyes. But some people get on fine with it... good luck x
Thank You, catscan next week will answer a lot of questions.
I don't think Dr Gupta is a electrocardiologist. Could you go to one of the top heart hospitals like Papworth or see one of their cardiologists privately? Good luck
Amioderone has a “black box” warning which means it never was approved as safe and somehow it got through for patients to take. It’s a very dangerous drug. I was in such a tizzy when nothing worked and my options were down to these toxic drugs or P & A. I did consult with Dr. Gupta. He is a truly kind caring intelligent cardiologist. It helped me immensely to speak with him. You know I have the pace and ablate. Best decision ever after suffering for years with ablations and toxic drugs that didn’t work but made me so sick. So scary these choices we have. Speak with Dr Gupta I’m sure he will help. xxx
How do I get in touch him? I'm thinking of just stopping it now or cut back to 100mg daily but I told my EP I would wait until after my cat scan on the 28th. I have always been afraid of this drug but was put on it without my approval or knowledge. Thank You for reply, have a Great Day!
Thanks . As you know , I am utterly conflicted and no nearer to a decision but I am going to make an appointment with Dr Gupta . I thought it was you that I remembered saying you had spoken with him and that he was very good. Think his soonest appointment is December though . He is very popular.
Best wishes
Jane
Thank You for kind words. I agree with what you say but I guess it's OK for some people. Will get a cat scan next week but what I am amazed at is EPs. response "not worried at all". Have a Great Day!
Thank You Dorchen, we should know a lot more next after cat scan. It sounds like I might have to go into permenant afib as well. Have a great Day!
Hi
I am in Persistent AF.
At 2 years 3 months BBs did not control my H/Rate.
I was introduced to CCB Diltiazem. Reduced to 120mg it suited me. 60s H/R Day now. I take this morning with no food after 1 hour wait after Synthroid, Thyroxin post thyroidectomy and 12 lymphs right side removed (2 affected) papillary cancer.
BB Bisoprolol for BP 2.5mg taken at night.
Pradaxa 110mg x twice day.
Now BP 110-124 Day rest and 60s H/R with 47 avge Night always on 24-hr monitor.
cheri JOY
I was on amiodarone back in 2007/8 as the drug of lasts resort for about 6 months , I was told to keep out the sun . It’s more than just a Vampire drug it caused bradycardia with me HR 40 and under which was worse than the flutter.This lasted approximately a decade before my HR went back to 60. Stay clear.
I agree, my HR is down in low 40s at rest. Hate this drug but when Dr. says last resort what can you do?
I now suffer similarly with Bradycardia so it’s a lottery from day to day /hour to hour whether I take a beta blocker
Hi
AF persistent I have but the rapid has been controlled. I can't have cardioversion, ablation, or any anti-arrhymic drugs. Reason the Echo showed a back chamber was enlarged.
I'm on Bisoprolol but reduced down to 2.5mg when CCB Diltiazem was introduced. 1/2 dose of latter was better balanced for me.
Care was awarded to me after the stroke with AF diagnosis because the cause of AF was the thyroid cancer which was not removed until 4 months later.
No followup after stroke and put on Metoprolol which did not control the H/R lower than 187 and showing pauses of 2 seconds through the night in the 24-hr heart monitor. I said NO to this drug as I had experienced it before causing breathlessness. The Dr in charge of me was an Endocrinologist and she ignored me.
That is why we all should fight for our corner.
Your story is so sadful. You deserve to be angry at the latest news. 3-monthly blood tests are important.
I hope your next tests won't be as bad as you are thinking.
Cheri JOY. 74. (NZ)
Thank You Cheri cat scan should be next week but EP doesn't seem worried at all, he tells me I can stop amiodarone if I want or cut back to 100mg or whatever I want to do. I thought he was the specialist not me!
Hi
Um. He is giving you information on what you can do.
Stopping or reducing Amiodarone either way may reverse damage.
He wants it your risk not his. He could be sued. In NZ we can't sue and that meant we cannot sue Johnson & Johnson and their damaging mesh while others around the have sued them.
Its like the Dr whom I instructed to prescribe me the lower dose of PRADAXA from 150mg to 110mg. Between my triage team and the transfer to my local hospital dosage was changed. She refused. But she did eventually but each time I pick up my prescription it reads of 110mg "PATIENT WANTS THIS DOSE".
I won my case. I found another Locum who totally agrees with me and the lower dose and has dropped the damming text.
It's your life and your decision. JOY. 74. (NZ)
I know I will have to make some decisions after cat scan on the 28? Thank You
Hi
Go into .. medsafe.nz.govt - amio....done.
It is an anti-arrthymic med.
Medsafe don't like it and there is a 10% toxic death rate.
The side effects are long and it warns Drs to monitor anyone on it.
You have a right to know all the drugs you are on and know side effects..
I can't take any anti-arrthymic because of a back chamber enlargement.
He said you could stop it.
Take care, JOY
Hi
It appears that this awful drug is used temporily. Were you missed?
When I was introduced to CCB Diltiazem I was left on a high dose of Bisoprolol.
Asking for guidance from our Healthline and a Dr on call there (weekend) and
NZ Heart Foundation I got to learn.
A BB and a CCB should not be taken at the same time!
From the NZ Heart Foundation Nurse was have Diltiazem reduced, have the two separated and reduced Bisoprolol.
This regime worked. But I did rely on outside help.
I can see how sometimes are in our court because I couldn't get hold of the private Heart Specialist. I believe it is wrong when you need help. CCB Diltiazem is such a powerful med. JOY
I will probably go outside the VA system for help. Thank You
Hi
What does VA stand for? JOY
Veterans Administration.
What do they do? JOY
They're Hospitals all across the US that treat military, ex military only free of charge.
Hi
I'm learning Ms ex Military.
I don't know alot about EPs but the Dr I had I discounted as she wanted me to wait 6 months post stroke for my Thyroidectomy, Surgeon and Annaesthestist said a.s.a.p and I was operated within 4 months. Also the Papillary had spread down 2 lymphs.(removed were 12 on right). She expected me to have RAI and I said NO. Then she wanted me in TSH suppression and I said NO.
Also she was pushing Metoprolol when I said NO but she still prescribed it to me. I later got it changed.
I reckon ask about and get an interested Heart Specialist who listens to your history and is interested in you.
cheri JOY
I do have a cardiologist who is aware of all this, in fact she wants me to wear a Holter monitor for 30 days.
Hi
Good.
I hope without taking the Amiodarone.
3 x 24-hr heart monitors in 2021 showed up BP H/R day and night with 3 different regime of drugs.
Ultimately 47 avge H/R NIGHT was apparent but Metoprolol showed pauses. These stopped when changed from Metoprolol.
But she left me with AF with H/R DAY 156.
I went to a priv REFERRED H/SPECIALIST. He sent me a Christmas Card.
Cheri JOY
Thats my resting HR as well. I'm sure I will have to go outside the VA system for sorting this out as I have supplemental insurance as well. Have a Blessed Day!
I find it very worrying that there is so little consistency among Cardiologists about which drugs are safe or best. My partner was on Amiodarone for a period either side of his ablation but his Cardiologist was adamant that this is a drug that he could not stay on. Are you going to get an Ablation or a Cardioversion?
Don't plan to but hopefully try another drug like flecainide. How is your partner now since stopping it, hope they're doing OK. Thank You for your reply. Have a Blessed Day!
He was very well for 18 months but unfortunately is now back in AF and waiting for second ablation.
Please don't let them put him on amiodarone, there's other drugs that are safer if he can tolerate them.
The no mention of him going back on it. He's currently on farxiga, digoxin and Bumetinide.
Not to frighten you but I was on digoxin and taken off of it because it is a very toxic drug as well but nearly as bad as amiodarone.
Yes - unfortunately most of the drugs have pretty bad side effects. He'll have a drug review after the ablation and hopefully come off some of them.
That would be good.
Hi
Sotolol is a Potassium Beta Blocker.
It can have side effects.
cheri JOY
Well that lets that out. Thank You.
Hi
You don't actually need an anti-arrthyrimic drug.
If you can control BP and H/R that in itself helps your AF. Mine slowed.
187 or 156 H.R day to 60s H/R Day so much improved. No more sweating and no more fatigue and no energy.
cheri JOY
Wow, if that's the case I can stop amiodarone and take my lisinopril and go back on diltiazim, although my Dr. had me stop lisinopril completely as Bp was too low. Thank You So Much.
So so very sorry to hear this! Evil!
Thank You for Kind words. We'll know a lot more after cat scan next week. Have a Blessed Day!
My mother had that issue and the doctor denied that it could be the amiodarone, but a pulmonologist said to cold turkey stop it immediately! Thankfully, her fibrosis cleared up, but we caught it very early. Otherwise it will continue even after the drug stops is my understanding. She is now with a different EP and on Tykosin (Dofetilide) and it works pretty well for her.
Tikosyn (Dofetelide) worked great for me for 25 years, I was one of the ones on the trial study before it was approved, main thing to be wary of is there a lot of drug interactions with it. Thank You for sharing that with me that fibrosis can reverse itself as I caught mine early as well. Thanks again
Wishing you well kocoach. I'm glad it's been caught early. And hopefully you will be put onto an alternative drug soon. Thinking about you.
Thank You Waveylines, I had an appointment with my EP a couple of days ago and he said I could stop amiodaron3e completely but I will go into constant afib so I dropped down to a half dose 100mg and I must tell you I feel much better, HR steady, not so tired, no spaced out feeling, so I will do this until the 28th when I have another catscan at my request and cardiologist wants me to wear a holter monitor at that time. I've made up my mind to either get this sorted out or die in the process? Thank You for caring response, How are you doing, weren't you supposed to have an ablation? Hope and Pray you're doing well also. Have a Blessed Day.
I have been on amiodarone since 2010. I have been in NSR since then and I have been beyond lucky in that I have had no side effects beyond the harmless corneal anomalies common in people who take the drug and some sun sensitivity. I've been on 100 mg/day since 2020 which I hope will be even less likely to damage me. What I have read is that at such a low level, few people get serious side-effects. This seems to be the case with me so far, and I hope it continues that way. I wish my good luck on the drug were the case with everyone.
This is good to hear and I am so pleased all is well for you. X
I'm on 200mg daily which is considered low dose, Dr. said I could cut back to 100mg but I want off of it completely, it's like being under "the sword of Damocles." Happy to hear it's working for you though.
after reading thru all the above comments…..Pace and Ablate. P&A is what it all ultimately comes down to….other than Dr Wolf (Houston Debakey Clinc) and his mini maze procedure - Ablations and Pills just ultimately and always FAIL given a year or two. I choose P&A for myself as I could not make it day to day. Symptoms were too bad (almost uncocious) I could get PnA done in a matter of a few days. So far so good. Only been 4 weeks so still too soon to make total predictions…but so far so good. My best wishes for all of you!
My cardiologist took me off this medication after a two week follow up at the hospital when first diagnosed. I am now on the lowest dose of Flecainide and it works well. He said "the side effects of Amiodarone were dangerous long term. Ask about other medications that might help.
Will do, but when first put on it was told this a drug of last resort and it seems it just might be that. Thank You
Given that I have had 3 ablations and 7 cardioversions, in consultation with my EP, I opted for dofetilitde over amiodarone. According to what I have read online there are minimal side effects if you make it through the 3 days under hospital supervision that is takes to start taking it. So far (month #2 now) it keeps my afib at about 10% of the time according to my apple watch. As far as pace and ablate, my understanding is that it leaves you in permanent afib, the pacemaker just runs the ventricles.
Hi there! I too was put on amioderone in the hospital. I found out afterwards during a routine chest xray, that I had some scarring in my lungs. It was attributed to the amioderone. I stopped immediately. I tried every other anti arrhythmia medication available over the years. Nothing lasted over 2 years. Ablation is not an option for me. Right now I am on Sotolol. It has worked like a charm! No issues whatsoever. However next month will be 2 years... I'm praying this drug is my Hail Mary & will be the ONE that DOES last more than 2 years!
Wishing you the best..
Thank You for info about sotolol will look into that. Did the scarring of the lungs ever stop? Ablation is not for me either at this time also. Don't want to put the whammy on you but it sounds like you're good now though. Thats great . Thank You for reply.
I was put on Amiodarone to prepare me for cardioversion. I'm still on it. It's been about 8 months.
My PCP wanted me to resume Metoprolol and I told her my blood pressure was too low. She said in an angry voice that I must take what the doctor orders.
Well, I resumed the Metoprolol and, while washing my hands in the bathroom, I suddenly dropped like a rock. It was a terrible experience. I could have died if I followed her advice.
I'm on Amiodarone until I have an ablation in a few weeks. Hopefully that will take care of my problems.
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