My doctor has confirmed that I have persistent AF (I only knew before hand because of great information on this website). She has stopped the Verapamil and now has put me on Amiodarone which she says may put my heart back into normal rhythm. Has anybody experience of this pl?
I have developed a hacking cough after a slow walk of any distance which the doctor has confirmed is the result of being SOB.
Jacky. Your profile doesn't show your country and there are differences.
Certainly here in the UK it is one of a number of drugs known as the devil's drugs. I understand that it used to be prescribed quite widely but nowadays is restricted because of side affects. The most frequent application is for one months or so before an ablation and three months or so afterwards. Is the prescribing doctor an EP or is it your GP?
I suggest that you search past posts on this forum as there is loads of information and are loads of comments and experiences. Some people took it for years without problems.
PeterWh . May thanks. It was the Dr who prescribed Amiodarone and a follow up in 3 weeks. Haven't yet found an EP and certainly not mentioned by doctor. She tells me that the decision for cardio version or ablation will be the decision of the cardiologist but as yet no appointment. I will do some searches for info on this subject.
Once again, many thanks
I have started a new thread below re some additional information.
You must push your GP for a referral to an EP and not a general cardiologist (that was the old way of doing things). Drawing a parallel that has been quoted many times on here if you had problems with your electrics in your home would you call in a plumber to sort them out and then let him call an electrician? A general cardiologist is the equivalent of a plumber whereas an EP is the electrician of the heart and the co-joined items.
I also suggest that you contact AFA patient services and also read up on AFA publications and NHS publications.
I thought that Amiodarone should only be prescribed by cardiologists and not GFP's.
.Yes, amiodarone is a powerful drug that can put your heart back in rhythm, but must be monitored because significant adverse effects may occur. It is one of those "pay the piper" drugs, so typically people are not on it for long. The hacking cough may be a side effect, and not just the result of being SOB. Are you a candidate for ablation? I think I would be exploring that route.
Also talk with your dr. about how you can improve your exercise tolerance to help to be healthier despite the A.F.
SRMGrandma . Many thanks. I have been walking slowly and swimming in the slow lane (I was a triathlete...after a fashion, not Brownlee brothers standard!) . But I always end up with a productive cough afterwards but my chest is clear so Dr. has said its associated with SOB. I haven't started Amiodarine yet, but Monday to allow the Verapamil to leave the body.
Wishing you success and constantly improving health.
I was put into Amiodarone after my first failed cardioversion. It lasted 2 days. With the Amiodarone the second cardioversion lasted 2 months then I had AF/NSR ....
My EP wanted me off Amiodarone prior to an ablation so I was on it for about 3 months +..... It's a powerful drug and there's lots on it if you google it. it definitely helped keep me in NSR but it's not a cure..... Trevor.
Trevor3839 . Thanks for your experience. Sorry to hear it's not a cure. Was still hoping. Will do some searching later.
Hi Jackymac
well firstly reading your answers, I am very surprised that your GP has prescribed this drug. I understood (but may be wrong) that only a cardiologist could prescribe this drug.
And then when you say you have not seen an EP yet, let alone a cardiologist then this seems a little like bringing a bazooka to the conker championship.
Amiodarone is a very strong rhythm control drug, posssible the strongest, it has many many side effects, and you should be counselled on those after it is prescribed. In my case the prescribing pharmacist sat me down for around 10 mins before handing the tablets over.
I was on it for 4 months prior to a cardioversion, and to be honest had no real problems, but was constantly aware and careful of any changes.
I am however not medically qualfied, but I would in your shoes ring the AFA helpline on Monday and discuss this with them it may help.
Be well
Ian
Beancounter . Many thanks Ian. I'm certainly going to do some research this afternoon. What does 'volunteer' after your name mean? Does it mean you are associated with AF asscn?
Hi Jackymac
What does volunteer mean? simply that I and a few others assist the AFA by volunteering to answer people on this forum,
As you can imagine the number of posts makes it impossible for all the questions to be answered directly by the AFA, so the volunteers, all of whom are fellow AF sufferers, try and answer questions, direct people to find the information they require and in a very small way also act as moderators, reporting inappropiate posts etc (of which thankfully there are very few)
None of us are medically qualified, (Although SRM Grandma was or is a nurse I think) however we have all been around for a fair amount of time in the crazy world of AF, and we are all different, just like other AF sufferers, so we can offer different perspectives.
Be well
Ian
Beancounter . Many thanks Ian. I thought that must be the case. You and the others do an extremely good job. I've found out more from yourselves than I ever have from my Dr's 10 minutes.
I'm a volunteer/ambassador for parkrun and it takes up a lot of my time!
I fully endorse what Ian says and I had decided (after seeing responses on my iPhone when I was at the hospital today) that I was going to write similar words tonight when I had access to my PC.
Another thing is that it is imperative that you have a full set of blood tests especially kidney, liver, thyroid, etc before you start Amiodarone so that your bloods are base lined. Then you need another set in approx 2 months time. This is what I was told.
My EP had decided that I should take Amiodarone for a month before my ablation and three months afterwards. He wrote to my GP for her to prescribe which she did and I collected the tablets from the pharmacy. However a few days later I had numerous phone calls and messages to contact the surgery and to stop Amiodarone immediately because liver function test showed the level as 4 (four) times the maximum. My GP's practice didn't know that I hadn't actually started the Amiodarone because hospital hadn't pressed the starting gun. It was actually the simvastatin that I had been taking for 4 months that had caused the liver problems. A week or so later I had to go to the hospital to see the cardiac admission nurse who went off a few times to see my EP who was doing procedures that day. In summary he decided that we should push ahead with the ablation without Amiodarone as it was far too dangerous in my case to even contemplate taking Amiodarone in the following 6 months, if not longer, and maybe never. It was actually my pharmacist who did a medicine review and told me to get the blood tests redone (I had had some only 5 months earlier). I was so glad she had said that because taking Amiodarone on top of the problems could have been very serious. After stopping Simvastatin new blood tests done 6 weeks later showed liver function was back in range so I was lucky no lasting damage.
I was told that a GP could only prescribe for the first time if that instruction was in writing from an EP or Cardiologist and that some GPs stick rigidly to only actually issuing repeat prescriptions (ie the first prescription has to have been prescribed by the EP / Cardiologist and collected form the hospital pharmacy. However this could be a ruling by CCG / CCGs. Years ago GPs were allowed to prescribe first time.
Are you already taking Warfarin? Amiodarone enhances the effect of it so if then prescribed Amiodarone the warfarin dosage needs to be halved. As assistant registrar did not know that my INR went up to 3.9 within a week. INR nurse and GP were also not aware of it. The pharmacist did not warn me as she 'Thought everyone knew that'
seasider18 . Thanks, will put it on the list to ring the INR nurse Monday.
I had a very serious reaction to Amiodarone fortunately I was in CCU at the time
JackyMac, Your GP is in overall control of your case. Because Amiodarone is a drug with potential toxic side effects ,it is usual protocol for a Cardiologist or EP to prescribe this drug? Your GP has probably decided not to delay things? Regardless of who actually prescribes this drug... you should have had a discussion and the opportunity to consider any known risks from this drug -and have been told of any alternative drug or treatment available to you- before you decide on it's usage? I am sure your GP evaluated your present situation and more importantly, your quality of life. This drug will ease your predicament until you get to see the cardiologist or , hopefully. an EP? All the best for the future.
Hidden Thanks. I've read the PIL and its scary. I've not been informed about an EP so must look into this for myself.
JackyMac / Wreck
A GP is, as their title suggests, a generalist. The vast majority of GPs have no detailed expertise in specialist areas such as hearts, cancer, etc, let alone detailed knowledge of all the pros and cons and medications. GPs never did have that and this is more true now when things are developing quite rapidly. Don't get me wrong I am not knocking GPs and I have defended them on previous posts when people have complained about them.
In fact even many general cardiologists are not up to date with all things to do arrhythmia because they are not dealing with them all the time day in and day out (most EPs only deal with arrhythmia). Don't forget that an EP is a cardiologist who has specialised in arrhythmia. The same goes in other areas - eg heart valves.
Some people have alluded to the fact that it is older GPs who are out of date and not up to speed but I disagree with that statement because too generalist and I believe that it is very much down to the individual GP, their outlook, their medical interests, etc. (ie some older ones may be very set in their ways and not up to speed but other older ones may be very up to date on say heart aspects. Equally some say in early 40s may have learnt things 15 to 20 years ago in their studies and what they learnt in their studies has stuck and is still stuck). At the end of they day they are all human and have very differing views.
Some GPs are still dishing out medication for AF patients that was withdrawn by NICE over 2 years ago!!
PeterWh Thanks. My GP has never mentioned an EP and I don't believe there is one in Kent.
I think that you are correct. I have just checked on the main AFA website and there are no specialists who do cardiac ablations who are in Kent. There are a few EPs who don't do cardiac ablations but it's not easy to find them hence why I did the search the way that I did. Just because they do them does not mean that's all they do not will it automatically mean you are a candidate for an ablation.
However from your point of view that does not matter an iota providing you are happy to travel to London (in my view well worthwhile). I travel from Hertfordshire into the biggest heart centre in London. I am quite happy to make suggestions if you wish either on here or private message if you wish. If your GP says no lets refer you to a local cardiologist you are quite within your rights to insist on being referred straight to an EP even if outside your area. If you can afford £200 to £350 I would suggest going privately for first appointment and then switching to the NHS.
Unfortunately there are GPs who haven't heard of EPs or who don't understand the subtleties / specialisms or possibly in some cases don't agree. Very fortunately my GP did know and referred me straight to an EP. As above she admits I know more about AF than she does though at that initial appointment I had never heard of AF!!!
i have never taken amiodrone but a close friend did and he was very ill long term. please google amiodrone toxicity and make your own mind up. there may be other drugs with a better track record that will do the same and be better with less effects on your body. I have found since being diagnosed with A/F to do a lot of research and ask a lot of questions.
suebel, Amiodarone really does work ,but should only be prescribed when all other known and tried drugs and treatments,have failed to work for the patient. Again, because of its toxicity and side effects ,protocol dictates that it is prescribed by Specialist Doctor .... who will enter a partnership with the patient to -fully monitor regularly.... and have the availability of all Laboratory and testing equipment to do this (hospital). Most GP's will not prescribe this medication without a letter from a Consultant Cardiologist or EP...... But this down to local protocols? The local GP is very skilled and will evaluate and treat the condition as presented and refer on to a Specialist. But this takes time to arrange...your well being and quality of life will be the first consideration.
Also , over time, medication loses its ability to suppress the condition and new drugs have to be tried .
I dont disagree with you but you have to weigh up all the evidence for all the drugs and make an informed choice. this is what i was trying to say. My own experience is that you have to ask questions and try to get a good cardiologist which can be easier said than done. I live in a rural area and had to push hard to get refered to a hospital with a good cardiology dept. where i am now receiving excellent treatment but it is a 3 hour drive from me and took me a year to get where i am. I had a stroke and persistent A/F and my own research helped me to ask the right questions to finally be confident in my treatment.
The amioderone topic has been bugging me as to where it is written. I've found it.
In NICE Guidance CG 180 Para 1.6.5 which was new in the 2014 update to the guideline it says do not offer Amioderone for long term rate control.
I suspect that there are other references in there and in other documents but it is not easy looking on iPhone (iPad has gone on the blink as it won't charge).
PeterWh Many thanks . I'll look that up soon. I am hoping not to be on it to long, but would like further information that's not in the PIL. Like, should the miracle happen and I return to NSR do I stop taking it immediately. Should I be doing extra resting / exercise whilst taking it for its best chance to work. The doctor says I should keep taking the Amiodarone even though I have my echo on Monday. Once I get the results I'll contact the names that you gave me.
Best wishes
Jacky
The part of the NICE Guidance that I read also said about getting a baseline echocardiogram.
In December 2014 I was preparing for an elective hernia operation. Inthe tests prior to the operation I was diagnosed in afib. The operation was cancelled and a cardiologist prescribed Amiodarone, Rivaroxaban and Simvastatin. Initially the Amiodarone was adminstered by a drip, thereafter I took tablets. Initially 800mg a day, gradually reducing to 100mg a day. I was taking Amiodarone for just under 12 months suffered no side effects and nor any bouts of afib. November 2015 still in sinuous rhythm, I was told to stop taking Amiodarone.
December 2015 the afib returned. Initially my cardiologist proscribed Bisoprolol. However I reacted badly to this with bouts of afib and faints.
I am now on Flecainide 50mg twice a day. The faints have stopped but I still have bouts of afib/tachycardia every 10 days or so. Wish I was still on Amiodarone but I know they are reluctant to proscribe this for extended periods.
Thanks Alan, that's interesting. When I was on Amiodarone 600mg daily after a week I thought my permanent AF was slightly less eratic but when I went down to 400mg and now 200mg daily I feel its as eratic as before I started them.
JackyMac My doctor has me on metoprolol, entresto, zaralto and now that Amiodarone stuff. None seems to be making any difference to the AF. Neither did cardioversion work. ugh.
Hi paulaeking, I had an AF that wouldn't go away and the NHS were taking too long for me to have a cardiologist appt so u went privately. whilst waiting I had amiodarone but wasn't happy taking drugs. I had a cardioversion privately, which was successful, and after 3 months came of amiodarone. I just take flecainide when my heart feels wobbly and so far in 8 months have only had to take the pill in my pocket 3 times and within hours have been good again. I knew I am one of the lucky ones. There are a lot of good people on this site who can give you good advice if you leave you question open. Good luck with the future.
I was put on amiodarone prior to a cardioversion to see if I could go back to a nsr, at the time the cardiologist said the success rate was approx 30%. It didn't work for me and I had a cv which lasted 11 months. However, I have suffered from an under active thyroid ever since as a result of the side effects of amiodarone, which I have to take another tablet for. It was the first step in the treatment for me, amiodarone first, then a cardioversion, then a RF pulmonary vein isolation.
Hi,
I was put on it after a failed CV and the first two weeks were hell with side effects (had to go into hospital after first two days). Since then they have subsided and I have gone from AF to a flutter and just get a little tired and dizzy but I take it at night (as with all my meds) so doesn't affect me too much. I started Magnesium Taurate at the same time so not sure which has been more effective.
Now waiting another CV while on Amiodarone and if that works I'll come off it. All in all it is worth persevering with in my book.
I was very nervous about starting Amiodarone, but exactly six weeks to the day after starting it my persistent AF reverted to NSR. I felt really well on it until I developed overactive thyroid and had to come off it. Sadly have not found anything else that worked as well and not suitable for ablation, so back in persistent AF again. All the best to you. 😊
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