Following 8 months in persistent AF, I have finally seen my EP, who was absolutely brilliant. (Was, or thought I was referred 6 months ago but heard nothing, and nor had he, which tells me he never got the referral). For most of my time in persistent AF, I didn't feel too bad, obviously because I got used to it as it was persistent, until last Friday when my symptoms suddenly hit really hard. My EP confirmed it was the AF and not the double whammy of a virus as I first thought. Anyway, due to my sudden deterioration, I took the plunge and saw him and wish I’d done it sooner.
The plan is that I go on Amiodarone for 2-3 months and then we do a DC Cardioversion and get me back into sinus.
Tonight I decided to have a read up on amiodarone and found an article claiming that it increased the risk of developing cancer in males, so I’m naturally concerned.
The risk of blindness is 1 in 10,000 fully reversible when you stop using the drug. To me, that's acceptable.
What's the equivalent with this cancer risk?
My EP is amazing, (more of that in a future post) and would have told me if there was anything to worry about, so I'm sure it's my paranoia.
Comments please.
Thank you.
NJ
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NJ47
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Hi - I rather think the risks of developing thyroid malfunction is your main concern and risks are just that - risks. As a short term treatment I think it is worth considering. Amiodarone certainly has helped my husband, he is still in persistent AF but much less symptomatic.
It is one of the most toxic drugs you could take and one of the most affective for AF, weighing up your risk:benefit is not an easy decision.
I was on this for a short period, around 6months in total, 3 months before a Cardioversion and 3 ish months following.
When I was in AF, i didn't feel too bad, other than all the issues of being in AF.
I had the cardioversion (my first) and was returned to NSR at the lowest charge, in one zap.
However , following the DCV i felt gradually worse, blaming bisoprolol (12.5mg a day) Rivaoxaban and Amiodorone, turns out it was all 3 causing my issues.
However, Amiodorone did keep me in NSR for 6 months, as you may know it has a half life of 3 months, so i think this is the reason I was in NSR so long.
But, I was getting sunburn even in my house, wearing factor 50, and it was winter!! my thyroid was also found to be damaged, thankfully 12 months after stopping these pills it came back in to normal range.
Good luck, but keep a keen eye on the side effects , or as BobD will tell you, effects.
I was in sinus for 6 months after stopping, and I am sure that the amiodorone helped that. Following that I had several AF episodes, some were resolved by DCV, others by IV fleccanide and some spontaneously . I would be anywhere from a couple of weeks to a couple of months in NSR.
I had an ablation about 15 months after my first cardioversion, and I have now been in NSR for 25 months.
Is this your first cardioversion? If it lasts even a short time it will be a good indicator that an ablation may be possible. As scary as that is, it's the best we have at the moment and without doubt the best thing I have done. Being in AF knocked me flat, I could barely function when I was in AF
Fingers crossed for you. My understanding is that if you are successfully cardioverted, even for a very short time, then you should be suitable for an ablation.
I was on Amiodarone for about 3 months late last year/early this year. My EP was running out of options and wanted to calm my heart down. I was also on Atenolol and Digoxin with the Amiodarone. It did calm it a little but even the three drugs together couldn’t keep me out of AF (it was at a lower heart rate then previously). I had dreadful rashes from the sunlight (I had factor 50 sunblock and avoided the sun as much as possible). I had rashes on skin that wasn’t even exposed. I developed issues with my lungs and my liver function test showed one particular enzyme was quite high (should have been under 35 and was close to 200) so my EP stopped it. Thankfully now, after my last ablation I’m feeling good and I’m NSR. I stopped the drug in January and still get the occasional rash. I haven’t had my liver rechecked but the doctor said the levels should return to normal and my lungs are good now (I had a CT scan to check them out). I won’t be going back on Amiodarone any time soon but it can be a very effective drug for some people.
I took Amiodarone briefly before two ablations, it never helped at all with preventing my AF and has left me with an under-active thyroid. So wish I'd never taken it, now on thyroid pills for life.
Same thing happened to a relative....he is now on thyroid medication for life after taking amiodarone. Electrophysiologist tried to get me to take it but I refused. Would rather await ablation.
Given that amiodarone was one of the drugs used to treat overactive thyroid it is not really surprising that given to people with normal thyroid function it causes hypothyroidism. Combined with the photosensitivity and potential lung problems you would have to be absolutely desperate to take it.
There is extremely high variability in response to Amiodarone. That said, there are some basics.
1/ The number one danger is lung damage which can be fatal. This is known as 'pulmonary toxosis'. To keep tabs on this, your lungs need to be checked out BEFORE you start taking Amiodarone so that there is a base line for comparison. You will probably need to insist these checks are done, though they are cheap and easy.
"Patients who are to begin amiodarone therapy should be informed about potential adverse effects and told to report any new respiratory symptoms promptly. They should have an initial chest x-ray and pulmonary function test, including a DLCO. These baseline studies serve as useful reference points should toxicity be questioned. Current guidelines suggest that a yearly chest x-ray be obtained as long as patients remain on amiodarone treatment (13). An immediate chest x-ray and pulmonary function testing should be performed if there is clinical suspicion of pulmonary toxicity (14)" ncbi.nlm.nih.gov/pmc/articl...
2/ As CDreamer pointed out above, the other major risk is thyroid. Again, baseline checks are needed. Then supposedly every six months. Every three months would be more reasonable. I was in a position to order and pay for my own thyroid function tests while on Amiodarone. The first spell of four months a few years ago the thyroid changed little. Then when put on it again two years later, my thyroid reacted much faster, and I saw major change after only three months -- I had detected this change just in time. Conclusion -- be skeptical about recommended re-testing intervals, and do the retesting more often.
These two big dangers outweigh the cancer risks. Other baselines you really should have are the usual ones: liver function, and electrolytes (especially Potassium).
Thank you SO much for this. May I ask how much those tests cost? Clearly that would be a very worthwhile investment and I think blood tests at 3 monthly intervals is a fab idea and one I'll insist on.
Ugh. British prices are usually daylight robbery. I do know the prices in Tunisia, and it might be worth a bargain holiday there to get them. A Chest x-ray costs 10 pounds. Doctor visit plus lung function tests, say 30-40 ponds. Blood tests electrolytes say 10 pounds, liver function 20-30, thyroid 20-30. Just walk in to any lab or x-ray unit. Lab results are often same day. X-ray, on the spot.
My guess is that in France and Spain the prices are about half the UK prices. A private prescription from a British doctor should work anywhere in the EU.
Having said that, other people here have suggested you ask your treating doctor about a safer alternative: Flecainide. From memory, the research done has shown a clear but small advantage of Amiodarone over Flecainide.
My own experience with Amiodarone was very positive. On a similar meds regime as Mikee though with no significant side effects. Now just on Bisoporol and Apixaban and been in normal rhythm for 14 months. With my limited research the evidence strongly suggests that side effects are dose dependent. Thyroid problems head the list (more prevalent in women than men) with ranges from 3% to 15%. As ILowe states it is important to have base line and regular blood checks and am sure that your EP will arrange these.
As i am sure you are aware, the 6-8 weeks is a loading period to allow Amio to become fully functional to give your DC conversion every chance of success. Do you know whether you will continue with Amio for a period after the conversion? The first 6 months seems to be a significant period to ensure long term success.
Be guided by your medical professionals and good luck, and in the words of
I was on amiodarone for 4 months beginning late August of last year. Initially it was wonderful because my heart went into NSR after taking 400mg/day for 3--4 days, and I began losing weight. I started taking it in the hospital after a cardioversion lasted only 12 hrs. My dose was reduced to 100mg daily when I was discharged, and I wasn't aware of any side effects from the amio until my hair started falling out. I suspected my thyroid was affected by the amio and a blood test confirmed that my T3 was affected. I stopped taking it December 18 and two subsequent tests show the T3 is improving and my hair is growing back. I hadn't been properly informed by my doctor or pharmacist of the risks associated with amio when I first started taking it, and wasn't really aware of how dangerous it is until my cardio said he wouldn't want himself or any family member to take it! Once I stopped taking it I had no problems with AF for 4 months, and now occasionally have brief episodes. Two episodes lasted several days, but the others have been only a few hours. I have flecainide to take if it lasts more than two days, but when I took it it didn't seem to help.
Cardiologist put me on Amiodorone after sotalol and 2 cardioversions failed to control AFib. Immediately I began having daily headaches, and by the second week, my hair began falling out at an alarming rate. After a month of taking the drug, all the while still having bouts of AFib, I saw the cardiologist who told me "that all drugs have side effects". I told him that they were not something I could live with, and discontinued the drug. It has been 4 months, and my hair is just starting to grow back. He did refer me to an EP, who is great (but his office staff is not). Waiting for an ablation.
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