After a recent cardioversion that failed after four days, I am now scheduled for another in mid September. Before that I am to start on an antiarrhythmic drug, which if well tolerated will continue after the next cardioversion in the hope that it helps my heart stay in sinus.
One choice being offered is Amiodarone which in some patients causes an increased sensitivity to sunlight.
I would appreciate any advice you can offer, is this side effect really common ? and if so how severe can the condition get. My AF nurse (who is great) is talking about factor 50 sun-cream as a daily requirement, long sleeved shirts and hats etc !
All the best
Colin
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Yachtsman
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Amiodarone is the drug of last resort by ESC protocol (European Society of Cardiology). It should only be ever used short term as it can do lots of other nasty things. As a doctor friend of mine once said "AMIODARONE DOES NOT HAVE SIDE EFFECTS--- iT HAS EFFECTS!)
Thanks BobD. My consultant is actually proposing Flecainide initially, but is nervous about it as my Ejection Fraction is currently 45%; it's not normally prescribed in this situation. If I prove to be intolerant to Flecainide they then propose Amiodarone instead. Assuming that the next cardioversion is successful, they are proposing to keep me on one of these anti-arrhythmic drugs in the long term, to try and maintain my heart in sinus rhythm.
I was on Amiodarone for 2 months and found even with factor 50 sunscreen, long sleeves and hats and avoiding going outside in the middle of the day I came out in all sorts of rashes, even in areas that were not exposed to the sun. When I had blood tests which showed elevated liver enzymes I was taken off it. In my case it was a drug of last resort but even that couldn’t control my AF. Thankfully my last ablation seems to have done the trick.
I’ve had 4 - 2 for SVT, 1 for AF and AFlutter and the last one just for AF again. My heart now has an awful lot of scar tissue - with the last two ablations Mt EP said “we did a lot of burning and I mean a LOT”.
Taking Amiodarone has damaged my thyroid (made it underactive) as it has to several other members on this forum. I will now have to take pills for life because of this drug. I hate it with a passion, but I knew someone who was on it for 8+ years and had no side effects. He didn't read the information leaflet and took it unaware of all the cautions, keeping out of the sun etc and was not monitored or checked once by his surgery in all that time!
Wow! I have had two blood tests in 6 weeks with my surgery. Amazed as they are not always on the ball but having great service from them with this unlike my old surgery.
I have been on this for 6 weeks now and for the first week wore factor 50 and only went out in the early morning - we were having the really hot weather which has only just finished here but after a while didn't bother and went out at all times and without sunscreen and I have not had any problems - yet., that I know of! I have my second cardioversion on Tuesday and I think - though can't remember exactly, am to stay on amioderone for 6 weeks post cv. My first cv lasted just short of 1 year. I am to have a knee replacement at the end of August so wanted the cv to hopefully put me back in NSR as it did previously so that I could get through the op and recovery and then I am looking into an ablation. Infact wish I had been put on amioderone before and after my first cv as it may have lasted longer though they are a sticking plaster which falls off rather than a cure. To be honest not had any side effects that I have noticed my bloods are all OK at the moment. I was supposed to have my cv 3 weeks ago but my consultant went away on 2 weeks holiday. The plan was for me to be on the drug for 3 weeks pre cv and 6 weeks (I think afterwards).
Oh dear. When I hear Amiodarone is being prescribed I want to shout from the rooftops. I hate this drug with a vengeance. It caused thyroid, liver and kidney problems for me and yes I spent a long time hiding from the sun so Vitamin D levels suffered too.
Please do all the research that you can before you take this drug as there are others available as an alternative.
We are all different. I have had Amiodarone three times (max four months each time). I was in a hot country and I went out without sunscreen for up to an hour at a time, following my belief that exposure to sun is not dangerous provided I do not burn. I read somewhere that Amiodarone only touches the skin once you have had 30+ grammes of it.
Frankly, skin effects are a minor problem. The other effects are much worse, much more dangerous, and can easily start sooner than the textbooks read by the doctors say they will. Eg thyroid troiuble, the BNF I think says, check every six months. Every three months is more like it.
Given that amiodarone was used ( not sure if it still is) to treat hyperthyroidism it seems logical to assume that thyroid damage is likely and monitor for it from the off. Even if larger doses were needed to control the hyperthyroidism people vary a lot in their response to drugs and smaller doses might well induce hypothyroidism in some.
Right. Amiodarone can give you hyperthyroidism or hypothyroidism. Both can be nasty. You should monitor before starting treatment, and IMO check every three months, not every six months.
I have been taking Amiodorone for 9 years and have blood tests about every 3 months to check all is well. I take 100mg per day. I don't sun bathe and if I am outside and it's sunny I wear sunscreen and a hat. If I am out in the sun without a hat my scalp begins to sting after about 10 minutes! I seem to be okay on this medication. I also take Ramapril, Aspirin, Bisoprolol and Levithyroxine. I also have an ICD fitted.
Pulmonary toxicity is the most serious adverse effect of Amiodarone please do your own research as I was on this drug and after 2months had pneumonia it took several months to leave my system also affected my liver.
I took Amiodarone for just over a year, with NO side effects and felt great. After stopping Amiodarone I was fine for a while, however AF returned tried Flecainide and then Dronedarone neither of which were as effective as Amiodarone, I had an ablation.
I took it for approximately 6 months.
1- I would get sunburn if I stood too close to a window, this was indoors, a sunny February morning, wearing factor 50+, I could not go outside and cancelled a holiday because of this
2- Also Damaged thyroid, mine became over active, thankfully 12 months after stopping the drug it returned to normal, but glad I stopped when I did.
3- Never again
as others have said, some people don't have any effects on this, but others have some pretty horrible ones
Many thanks for your replies. Seems to me that a minority of patients escape with no or minimal side effects. For the majority side effects are common, ranging from a nuisance (e.g. sunlight sensitivity) to major (thyroid damage etc.).
In any event it's clearly a drug that really is only suitable for short term use.
I would suggest that the vast majority take Amiodarone with no significant side effects. The usual forum members who unfortunately did encounter side effects will post with their experiences, those who were successfully "chemically" treated have moved on.
Check out the link for a balanced and scientific trial ( not anecdotal).
Right. The trouble is that the effects when they happen tend to be serious. Also, checks to spot these effects soon enough to mean they are minimised, may not actually be done at all, or are not done frequently enough.
Last time I accepted to go on Amiodarone, I bargained with the doctor: "I agree, provided the following conditions are met...." The medical literature I have seen sometimes misses out the tests, and/or suggests a long time before a retest is needed.
The article you refer to is interesting, but shows once again how medical people downplay side effects. "Major organ toxicities in the thyroid (2.5%), liver (2.2%), eyes (0.6%), and lungs (0.3%) were rare". To say that an incidence of 2.5% major thyroid problems is "rare" seems to me to be not the word to use. That is one in 40. This is higher than the risk of death after heart surgery.
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