Scared about starting amiderone

[Parya]

Hello everyone been the last 8 months with gp trying to control afib till last week was on 10mg bisoprolol and digoxin not a low heart rate but ok, then developed huge asthma attacks on the bisoprolol but was ignored for 2 months until I kept charts myself, so taken off digoxin that day and 2 days later stopped bisoprolol and put on dilitazem which doses have been increased every few days now today put on 180mg twice a day as heart rate 120 resting. Finally I got a referral to a cardiologist privately next week and my gp said he will put me on amiderone which is really scaring me as I am so sensitive to meds of all kinds and this is such a toxic drug has anyone actually been on it for a long time and been ok as far as side effects?

[Desanthony]

I would wait until you have seen the cardiologist as they will likely suggest what medication to start you on.

[Afibwinner in reply to Desanthony]

I have afib with rvr. I had a watchman implanted and 4 weeks later a pacemaker. I have a device that monitors my heart 24 /7 so that Boston Scientic can see activity. I was in afib 8 days out of 100. I take an 81mg baby aspirin, 100mg of amiorderon 1 time a day and 25mg of metoprolol 1 time a day. Atorvastatin 100mg 1 time a day. I also have a CT periodically to monitor my lungs to be sure they are clear of interstitial lung disease. I have been on amioderone for one year and doing very well. It was started in the hospital with 400mg dosing, then to 200mg a day and now 100mg a day. This is a very low dose. I was also concerned when I started,it. There is also a newer drug Multaq that is safer than amioderone. I certainly would give amioderone a try.

[Parya in reply to Afibwinner]

Thanks that is reassuring.

[BobD Volunteer]

Amiodarone is a toxic drug yes and has many affects. It is not a good diea long term but can be benficial short term in manitaianaing normal sinus rhythm . It should be considered the drug of last resort. I suggest that you let your cardilogist/EP advise you.

[Parya in reply to BobD]

Thank you Bob I just want to be prepared with some questions if this is what is prescribed as my gp sounds certain it is. And of course whatever the cardiologist recommends I will follow this advice as these meds are prolonging life and hopefully not too many side effects for qol.

[CDreamer]

I am rather horrified that your GP wants to manage your treatment without a referral and wants to start you on this Amiodarone. What screening tests have been done to assess your suitability? Normally GPs refer to secondary care ie: cardiology to recommend treatment plan.

As the others have said - wait until you have spoken to a cardiologist.

[Parya in reply to CDreamer]

Hello gp cannot prescribe amiodorone but after 2 requests for him to refer me privately as I have never seen a cardiologist in 8 months when I was diagnosed he was insistent that he could get me stable but it hasn't worked I also had to pay for a holtor myself as I have never had one and thought it would bring some clarity to the system I have fallen through the cracks since diagnosis so finally he has referred me telling me the cardiologist will very likely prescribe amiodorone so I just want to be a bit prepared when I go in as there is nothing worse than coming out and forgetting to ask a question thank you for replying I am in a bit of a state as the gp took me off the high dose of bisoprolol to go onto dilitazem so cold turkey symptoms horrendous just trying to find a way through this by taking initiatives myself as it's all been a mess so far.

[Midnight2022]

I am also sensitive to meds. After cardioversion I was on amiodarone for 9 months and it’s a very effective drug. But yes toxic also. I had blood tests every month and as soon as my liver showed an adverse effect I was taken off it. But as result I’m back in persistent AF!! And waiting for pace and ablate procedure. Amiodarone can only be temporary fix.

[Lilypocket]

I certainly wouldn't start Amiodarone unless it is prescribed by a heart specialist and you are closely monitored.Having said that I was on it for six weeks with no ill effects and it was very effective. It put me back into normal sinus rhythm very quickly and when I was taken off it I stayed in normal rhythm. But this was after an ablation and it allowed my heart to heal peacefully.

Take care

[Redactrice in reply to Lilypocket]

Useful input, thank you. I am looking at a second ablation (still having lots of AF five and a half months after first one) and am wondering about a short course of amiodarone to try to keep everything calm for better healing.

[Redactrice in reply to Redactrice]

After the next ablation, I meant.

[Lilypocket in reply to Redactrice]

I wouldn't be able to comment on how it might work for you but I had so many rhythm problems after the ablation ( not helped by the fact I was taken off all medication the day after it) that my ( new) cardiologist firmly put me on Amiodarone to give my heart a rest telling me " your heart is very tired". I accepted her decision ( didn't have a choice really 😊).What sort of ablation did you have?

[Redactrice in reply to Lilypocket]

Wow. No more meds from the day after sounds a bit radical. I was told it would be at least three months before I could look at reducing or stopping any of my drugs. When I got to three months -- no way; I was still having too much AF and fast AF. It's coming up to six months and I'm still on all of the drugs, bouncing in and out of AF (a week in, a week out; a day in, a day out...)

I had a cryoablation. My original cardiologist/EP retired just weeks before my ablation. The new one does cryoablations. It was under local anaesthetic, which was fine, except they also needed to do a cardioversion and I was still conscious. It may have upset the team more than it upset me. I didn't realise what it was and it didn't hurt, it was just very strange (I said so, and that was when they realised I was awake).

My cardiology team is so busy that follow-up is minimal. This forum has been very useful for anything relating to drugs. Yes, we're all different and have different reactions, but it has been helpful to know that I am not the only one who has a big problem with bisoprolol, and that there are good reasons to avoid amiodarone.

My heart must be very tired too. I've had AF for 12 years, but until I caught Covid in May 2023 it was a very infrequent, very minor problem. During the pandemic I didn't have a cardiology check-up for more than three years, and after I had Covid I went into persistent AF. After I asked to see my cardiologist, I had a seven-month wait for cardioversion (stand-alone cardioversion, not the one I had during the ablation) and another seven months for ablation. I have seen people on here saying they have waited more than a year.

I try not to think about long term damage but it's hard not to. I'm only 60 and I have no other health problems.

[Lilypocket in reply to Redactrice]

Yes I think it is a bitter pill to swallow when the wait to see the relevant person changes the outcome. You were in persistent Afib while waiting 7 months for a cardioversion and a long wait for your ablation all of which can affect the outcomes of an ablation. Hopefully things will settle for you. I think if or when you have an RF ablation it could have a more positive outcome 🤞🤞

[JezzaJezza]

I have SVT and after Echo, 24 hour holter and heart mri I was placed on dronedarone (Multaq) for rhythm control and 2.5mg bisoprolol to control palpitations. The combination has been extremely effective and I’ve not had a single episode of SVT since and only occasional palpitations which I can normally link to a trigger. I’m coming up for 1 year on them.

I’m in Ireland and have very good private medical insurance and so fortunately I had consultation, diagnostics and follow up consultation all within 6 months. I have full bloods done every 6 months to check the meds are not impacting liver and kidney etc.

I hope you get some answers soon.

Best wishes

Jezza

[Rainfern]

Hi Parya, I’m glad you’re seeing a consultant at last! Remember in the end it’s your choice whether to take amiodorone. It’s often given for a few weeks prior to a cardioversion, as in my case. It did nothing for me but two years on I was still having blood tests for potential side effects. It hangs around. See what alternatives the consultant can suggest. Your GP has overstepped the mark!

[wilsond]

Is your GP a mind reader? See what the expert says next week. Amiadarone is certainly a treatment but not the only one.I've never had it,but lots of people on here have, usually for a short while, often in preparation for ablation.

Side effects always vary between people too.

Try not to worry too much

Best wishes

[colourblue]

Hello, I had 9 months on Amiodorone, I eventually came slowly off it as it was affecting my kidney function, also my Optician was amazed it was prescribed. Obviously you need to be guided by your Consultant. My very best wishes to you.

[PeterACross in reply to colourblue]

Out of curiosity why did your optician react in this way?

I’ve been on Amiodarone since Oct 2024 after my CABG & replacement valve. I wear varifocal glasses and I’ve noticed in recent months my distance vision has got worse, my last eye test was 8 months ago. I wonder if this is medication related or just a natural change in eyesight?

[Twosumsmum in reply to PeterACross]

Amioderone caused vortex keratosis in my eyes , resolved when I was able to stop the drug after the AVnode ablation / and new crpt pacrmaker .

[Visigoth]

I too was very scared of taking amiodarone initially but I’m so glad I did. I’ve been on it for nearly four years now and it has kept me very stable, with no serious side effects. I am on the lowest dose and I feel very well but I have six-monthly blood tests to check that all is ok with my thyroid, liver etc. That said, I am not sensitive to meds and I’m aware that many people have had a much less fortunate experience.

[domhnalldubh]

I have been on Amiadarone for about 6 weeks. I was nervous at the start. Deciding how to act when there are risks and downsides attached to all options is difficult . My doc provided me with ample information and did not push the drug. The local clinic had made a video about the drug, It was very helpful. They tested me carefully before deciding that I was a good candidate. I appreciated that. They offered it as an option because of the serious impact AFib was having on my quality of life. I was put on a loading dose for two weeks. This quickly moved me back to normal rhythm. This was an enormous relief. However, when the dosage decreased I reverted back to AFib. It was recommended that I go back to the loading dose for another week. I was very disappointed by this development but deferred. Again it worked quickly. I am now back to normal rhythm and back to a maintenance dose. My fingers are crossed. It has been emphasized to me that I must monitor closely how the drug is affecting my liver, thyroid and lungs although I could wait a few weeks before doing so. I was told that my body needed time to adjust to the drug. So far I have no regrets about taking the drug. But I emphasize that my choice was a personal one that hinged on a number of factors, particularly my high level of trust in my doctor's opinion that this was an appropriate option for me.

[Ppiman]

Fell relief: search online for "low dose amiodarone safety". It's an excellent study, well worth your time.

Steve s

[Bluetonic]

I'm surprised a GP can prescribe that!

I was on Amiodorone for a while before my ablation. You need to be really well monitored if you do decide to take it, remember that you don't have to take any meds if you don't want to.

I will certainly never take amiodorone again, but I do know that some people seem to get on fine with it and it helps them

[tbone421998]

I was on it as a last resort before my cardiac ablation in 2019. Only side effect I had was memory loss. I’d be taking my wife and sister to visit her dad, a trip I’d made a hundred times, but I would end up in a different city about 100 miles away as I’d missed my turn I’d made a hundred times. Happened a couple of times.

[mcpacs]

Why did they want you to go on Amiodarone? There are other antiarrythmic drugs.

[Jajarunner]

I've been on it for two years. Slight halo round eyes, slightly worse under active thyroid. No other side effects and it has given me my life back after four ablations and 11 cardioversions in five years. 👍

[Jishuang44]

I had a cardiac arrest last Spring caused by AF. I now have an ICD and have been on Amiodarone for 12 months. The side effects for me have been hypothyroidism, skin sensitivity in the sun (sunburn when outside for only half an hour), corneal deposits and low blood pressure - but I have had no AF since I started on it When I last saw the cardiologist I asked him if I could come off it because of the side effects. He said I could stop it and double my Carvedilol if I wanted but wouldn’t actually tell me to do it as he didn’t want to be responsible if my ICD suddenly started firing I’ve been stuck in a state of complete indecision since December. I doubt I could double my Carvedilol when I have a heart rate of 60 and a bp of 95/59. Good luck with your decision. Make sure to ask your cardiologist lots of questions about your options. You can see from this chat what issues others have had.

[sarasota222]

Hi, sorry to hear about your problems. I was put on it, but felt very ill and came off. There appears to be some concern about this drug.

[BeeBee79]

Hi,

I have just come off Amiodarone after 2 years on it. It has affected my thyroid so I'm on meds for it and have to be careful but it certainly does the job. It's a shame about the side effects.

I hope you tolerate it as well as I did

[RF260]

Hi, I've been on it for 2 months, originally taken to support a Cardioversion that was planned for mid Feb. Got me back into normal rhythm within 10 days so big tick and no need for the cardioversion. I'm not aware of any side effects as yet, had full bloods taken in January so have a reference point , will aim to have bloods checked every 3 months. Saw optician for routine test last week and no sign of any corneal deposits which is a common side effect. Only current pain is putting on factor 50 sun cream when going for walks. Good luck on your decision making..