I am reaching out to you again. There are two problems I need information on. I was diagnosed with afib August 22 and Sept 1, 23 given amiodarone 200 mgs daily. because afib became continuous. I have found it makes me lose weight and I am contiuously eating to try to keep my weight on. Has anyone else had this problem
Also, it is crucial and serious that I stop taking amiodarone and would like to know about how this is done. The reason is I have a blood disorder and take hydroxyurea. I have developed excrutiating debilitating venous ulcers on my legs and heel which the hydroxyurea is preventing from healing and have to stop taking the hydroxyurea and change to another medicine as soon as possible.
The hemotologist and other cannot find a medicine I can replace the hydroxyurea with because the few available react with amiodarone, ... I need to replace the amiodarone. with another medicine so that I can have a medicine that will allow the ulcers to heal instead of the hydroxyurea.
I will be speaking to the cardiologist next week, but would like to understand what happens when you stop taking amiodarone, how this works. Is it phased out or can you just stop. Would anyone know anything about this. Can someone please get back me. I would be very grateful. Thank you for reading this, I hope I didnt make it too complicated.
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kitttycat
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Paul
Weight Loss on Amiodarone:
Weight loss is not a common side effect of amiodarone. However, everyone's body can react differently to medications. It's important to communicate any concerns about weight loss to your healthcare provider. They can help determine if the weight loss is related to amiodarone or if there might be other factors contributing to it.Discontinuing Amiodarone:
Discontinuing amiodarone should be done under the guidance of your cardiologist or healthcare provider. Sudden cessation of amiodarone can have adverse effects, and a gradual reduction is typically recommended. Your doctor will assess your specific situation and create a tapering plan based on factors such as your heart rhythm, overall health, and other medications you may be taking. It's crucial to communicate your need to discontinue amiodarone promptly due to venous ulcers and the interaction with hydroxyurea. Your healthcare provider will work with you to find a suitable alternative that won't interfere with your other medications.
Alternative Medications:
Your cardiologist may consider alternative antiarrhythmic medications based on your specific health condition. Drugs like sotalol, flecainide, or propafenone are some alternatives, but the choice depends on your individual circumstances. Your cardiologist will weigh the risks and benefits and select the most appropriate option.
Consultation with Specialists:
It's good that you're scheduled to speak with your cardiologist. Additionally, you may want to consult with a haematologist regarding the discontinuation of hydroxyurea and finding a suitable alternative, considering your blood disorder. Remember, it's essential to work closely with your healthcare team to ensure a safe and smooth transition. They will consider your overall health, current medications, and the specific reasons for discontinuing amiodarone and hydroxyurea. Do not make any changes to your medications without consulting your healthcare provider first.
I recommend discussing these concerns in detail with your cardiologist and haematologist, as they have the expertise to tailor a plan that suits your individual health needs.
Hi thanks so much for getting back to me and for the information. It sounds like there is going to be some complication is all of this. I have seen the haemotolgist and the pharmacist at the hospital is helping to find a medication to replace hydroxyurea that will work with amiodarone and so far there isnt much success. Hopefuly the amiodarone can be replaced to be compatible with a hydroxy urea replacement and resolve all of this. Its worrisome. Thanks again.
Good advice from kitty cat to which I would add that Amiodarone has a long half life - meaning it will take something like 3 months to clear your system so really what should happen is that your haematologist should work with both your cardiologist and a Consultant Pharmacist to come up with best scenario for you - and I really hope they can.
My very limited experience of multi disciplinary teams is that they must decide which action is priority and as AF is not immediately life threatening and options other than drugs are available, that may be a consideration for you which you could explore with your cardiologist. I cannot take ANY heart drugs because of contraindications with a muscular neurological condition and found that pacemaker has controlled my AF and symptoms very well and all I now take is anticoagulant.
Hi yes this does help. My hope is that the hematologist, pharmasist and cardiologist work together for the best option. I am sure someone has faced this in the past. Amiodarone is the first drug I have taken. I am willing to have a change over take months. to clear up the situation I am in with these very painful ulcers. Thanks for your help.
Hi Kittycat Amiodarone saved my life when I was rushed into CC with VT - Really I remember little.
However amiodarone wrecked my thyroid and it was stopped with no substitute - I then started with AF and it was bad, I was put back on a smaller 100mg of amiodarone along with riveroxiban. blood thinner.
Not easy to come off amiodarone .
You must let a cardio or gp sort that on, just coming off can be dangerous. YOU really can't stop it, maybe a cardio will take you off with an appropriate substitute, there are some for AF,
Don't do anything on your own - take care and good luck.
Hi Ern, thanks for your response and wise advice, I appreciate everything I hear. I am am willing to do what I have to, to get this to work out, I try to look on the positive side. Thanks for your wishes.
Ironic my Pharmacy have no amiodarone and can;t get them, my GP said try somewhere else, I did and some coming tomorrow, even new pharmacy does not have the full 28 - In short I have to move my pharmacy to another village, because it seems there is a shortage, take care/
I was onAmiodorone for a couple of months prior to having a cardioversion. Following the CV my persistent AF returned after a few days and I was advised to simply stop the amiodorone - nothing about coming off it gradually. I didn’t notice any withdrawal symptoms but my AF did return to previous levels of breathlessness on stairs, higher HR etc. I was not able to take bisoprolol as my BP can already be quite low, so the EP prescribed Digoxin which for me was like a wonder drug- my heart rate lowered and energy greatly improved. It’s a good old fashioned drug but doesn’t suit everyone. I stayed on that until the morning of my ablation and again, had no problem with withdrawal. Good luck and hope you soon have things sorted.
thank you for this information. I just got off the phone with the cardiologist and he plainly is not interested in discussing anything about this. He kept saying there is no substitute for amiodarone, (I use the word substitute) and was pretty rude- we know there is no drug that does the same thing, but there are other types of drugs available to take. He didnt understand. I gave him the number of the hematologist and hospital pharmacist. I will still have to find a solution. thanks again
That’s not good your cardiologist was rude. I wonder if you have thought of paying for a consultation with an EP - Electrophysiologist. I have done this twice and it was worth every penny. My EP is a lovely man, I was able to have a half hour consultation each time, and he works both in private and NHS. It was him who took me off the amiodarone and tried me on the Digoxin. And also did my ablation (on NHS)
My sister has permanent AF and is quite happy to stay that way, controlled by medication. She barely notices it. My AF was more symptomatic but that might be a difference in personality - she’s more stoic than me!
Wishing you luck kittycat, I hope you’re able to get this sorted soon. Let us know how it goes.
Amiodarone can take 3 months to come out of your system and whilst I would consult with your doc before stopping, it was my understanding that I COULD stop immediately but they weaned me off it to see if an ablation worked but once it was out of my system, my af returned.
Weight loss has not been a side effect for me but Amiodarone can mess with your thyroid so maybe the weight loss has something to do with that? I’m guessing you have regular blood tests?
Hi Bee - it seems to make sense to wean off of the amiodarone. I am wondering was the afib the same when it returned or more severe. I do have blood tests, the last one being Oct and was okay, but I saw something that said you could lose or gain weight on amiodarone and was wondering about this. I am eating all The time to try to hang on to it. Thanks for getting back to me.
I’ve definitely gained weight - even when I diet, I can’t seem to lose more than a couple pounds. It’s so disheartening. My Afib returned with a vengeance and I developed atrial flutter too. This was after a 4th ablation 😭
I was on amiodarone but only for a relatively short period of perhaps three or four months. It made me feel very bad so I asked the cardiologist if I could return to Sotalol to which he reluctantly agreed.
I was surprised and concerned that he simply told me to reduce the amiodarone for a couple of days and then take the sotalol immediately, especially because I had read of the very long half life of the amiodarone and also because Sotalol is one of those contraindicated drugs. I was so worried that I consulted a UK cardiologist over the Internet (costing me several hundred pounds!) who said I should phase in the sotalol with a smaller amount until the amiodarone had passed out of my system which took take a month or more to decline.
This worked fine and it was the right decision for me as three years on I am feeling relatively fine despite having permanent AF. The Sotalol controls it and there are done of the very serious side effects and relatively few contraindications with other drugs.
Hi Oscar thanks for this information. This is a good idea to consult a cardiologist over the internet. I dont think we can do this here, but could contact one in the UK. What is permanent afib like. I am wondering about it. Are you always conscious of this because you can feel it. Can you let me know. I dont know how the solution to this situation I have will end up, I may need a different cardiologist. The method to take to quit amiodarone is a worry. Thanks again.
I did not know I was in permanent AF as it didn't really feel much different but the cardiologist told me I was and then the GP never stops telling me when I complain. It does not of course mean continuous heart racing and with Sotalol I have very few of those episodes, but it means that the beat is perpetually irregular. I can of course feel this when I take my pulse manually, and the BP monitor and oximeter shows this. I know when it is 'kicking off' as I can be very breathless especially with exercise and the most difficult thing is physical work lifting, carrying and walking to and fro with armfuls of wood etc (we live in the countryside!). Walking up a slope is the most difficult and noticeable thing, and I have to stop and catch my breath, although I force myself to do a very steep slope a couple of times a day (a steep climb of about 50 paces) but I need to stop after every 20 or so steps.
I think the work at maintaining reasonable physical fitness is important in keeping the worst aspects of AF at bay. But like every AF sufferer I get occasional episodes of racing pulse and palpitations which are very unpleasant and scary, but no more often than previously when it was pronounced as 'paroxysmal'.
Everybody is rather different but I don't think the word 'permanent' should scare people who have AF as that is often the inevitable result of the condition. I am more worried about eventual heart failure of course. But there are many worse things that can happen once you get to my kind of age (which is 77).
According to my GPs screen Amiodarone has a half life of up to 140days and up to a whole year to completely clear your system. So it does not leave quickly.I think it's vital that your specialists talk together and plan next steps because coming off Amiodarone will not be a quick solution to the problems with your ulcer medication. What should happen is there should be a MDT mtg and a lead doctor agreed on to feed back to you the outcomes recommendations for you to discuss.
Even though Amiodarone has a very long half life I wouldn't stop it unless you are medically advised to do so. Are they having this meeting and is it your cardiologist who eill be feeding back to you at your next appointment?
Hi Waveylines I have a cardiolgist who well frankly could care less. I have seen him three times and am seriously thinking I should make a change. He was very rude to me about the whole thing and just said "then go off it". I did give him the phone number of the hematolgist and the hospital pharmasist as the pharmasist couldnt find a drug to replace HU that was compatible with Amiodarone. She wanted me to speak to the cardiolgist about taking something else so that she could find one to match the something else drug. The pharmasist said they weren't doing anything with anything until he okayed what ever it was. He didnt like this. At this moment its left like that. I appreciate your advice. I looked at your profile and I know you have been through a lot and know a lot. Thanks for your interest and for getting back to me.
Oh kittycat I'm so sorry to hear this. Some of these consultants are far too big for their boots.....lol. Dreadful thing to say!! I'd have a quiet word with your haemotologist and ask if they could liaise direct with him.. I suspect your cardiologist has a bit of a reputation....lol.
18 months on Amiodarone gave me calcium deposits in my eyes and other issues. Migrated onto Dronedarone which is almost the same as Amiodarone but without the iodine and for me, just as effective but without the side effects.
To go further I had a pacemaker in Feb 2023 and recently completed the process with AV node ablation. Expecting to stop Dronedarone within a few months.
Hello Sheepbreeder thank you for this information. Sorry to hear what happened to you with amiodarone. It is a very toxic drug and I hope I never have to deal with any of the things I have heard about, but I do have the losing weight problem. I had some good news, but I dont know if it will work out. I might be able to apply to a progam to get a very good drug replacement for hydroxyurea that will work with the amiodarone, no side effects. Thanks again for getting back to me. I am glad everything is working out for you.
I took amioderone for 6yrs without any adverse effects but others have had problems with it and it's not a nice drug.It has a long after life and will stay in your system for weeks/months.
I wouldnt reccomend coming off of it without medical advice though.
Hi Nannysue thanks for getting back to me. How did you get off the amiodarone, how did you do this, and what happened. When I asked the cardiologist about this. He said " just stop it" and couldnt care less. I have learned enough that you cant just do that when you dont understand what it is you are really doing. I have received some news though - that I might be able to apply to a program where I could receive a very good drug instead of hydroxyurea which would work with the amiodarone. That certainly would solve the issue I face. Thank you again
Well the amioderone stopped working for me. I went into permanent AF. Infact stopping it immediately is exactly what my EP instructed me as it was no longer keeping me free of AF.I did just stop it and nothing actually happened, however I must stress that this was all under instruction of my EP.
I've since gone on to have the pace and ablate proceedure.
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Back from EP after Cardioversion Failure
AF seems to have settled down. No more problems
