Hello, AWOL long time! Update & questions?

Few weeks ago my cardiologist prescribed Amioderone, saying it would increase the chances of my second ablation for PA being effective. It does seem to help the horrid sensations of AF in my chest.

But, concerned about side effects. Feeling generally unwell and last 2 days severe pain in my right shoulder, worse on breathing in.

I'd be interested to hear others' experiences of this drug? Cardiologist said was a 'last resort' measure for woman my age but risks worth it, on balance.

Btw, INR went to over 9 & had severe bruising everywhere & blood in urine - the hospital gave my IV vitamin K, but still all over place. Maybe it's not bad thing Hammersmith just postponed ablation from 23 June until July!

Bev

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  • Hi Bev

    Also on amiodorone. I started on 200mg per day for about 6 weeks. Two weeks prior to an ablation procedure. The way I understand it, the idea was to give the ablation a better chance of holding and allow me to stay in sinus rhythm for long enough that more normal electrical pathways reestablish themselves. It's been a month since the ablation and I have been in normal rhythm for that time, apart from a few ectopic beats.

    Saw the EP cardiologist yesterday, he says to stay cautiously optimistic, the sinus rhythm is great BUT the 3 month blanking out period is not over yet. We have agreed that I should stay on amiodorone for 3-6 months, the longer the better but certainly no more than 6 months.

    I do get a severe sharp pain just below my left shoulder blade. Not sure of the cause but started after a few days on amiodorone.

    Like you, I am really concerned about the side effects of amiodorone but figure that I can discontinue at any time. The EP cardiologist told me given the dose I am likely to be OK on it for up to 6 months. But he does agree that it is not a long term solution.

  • Hi Bev - While in hospital for the second time when my heart wouldn't stop racing I was prescribed Amiodarone from the January of last year until fairly recently (stopped the medication about 2-3 weeks ago). I have to admit that at that time I felt so much better on this drug with no side effects at all, however it didn't stop my regular sessions of PAF. I also retired from work at the same time as I wondered if the stress of it was causing my problems, so leaving work could have been why I felt better.

    I had an ablation last June which didn't cure my problem, but since then at least my heart rate doesn't go as high as it did before. Now it goes up to about 120-130 when I have my PAF, but won't stop its racing without my having a cardioversion (have had two in the last six months). Despite this my EP in a telephone consultation at the end of January suggested I wait and talk to him again in August. He told me to continue taking the Amiodarone. Since that time I have had another 6 weeks with my heart racing constantly. I have telephoned his secretary and tried to get back to see him earlier, but without success and despite my hospital telling me they would request that he sees me earlier nothing has happened. I do envy people on this forum who have such caring EP's. Mine appears to be totally disorganised and with no time to spare.

    After being left to continue taking Amiodarone for 18 months I have decided to take myself off of it and I have to say my heart appears to have calmed. I am now trying some alternative remedies and eating a more healthy diet. I did not have any of the side effects you have mentioned and would suggest you make your GP aware of these, especially the pain you describe, if you haven't already done so.

    As your ablation is not too far away I would perhaps suggest that you do as advised and continue with the drug, if you find it suits you, and hope that you will not have to take it once ablated.

    Jean

  • Hello Bev, As you say, perhaps better not to have your ablation until things are bit more under control on the INR front. I was on Amioderone for about six weeks a couple of years back. I don't recall the shoulder pain, but I did have side effects. The same as you, feeling generally unwell, but more specifically very bad night-time sweats. I was having to change my pyjamas in the middle of the night! Do hope the ablation works for you when it comes.

  • Hi Yack, it's helpful to hear others' experiences, so thanks for replying. I get hot flashes/sweats but not sure if it's a hormonal women thing ha ha. Bit, it's no joke having to change at night for sure !

  • About nine years ago I went to A&E when I was in af and was kept in overnight and then put on Amiodarone. It didn't work for me and gave me pains in my chest and left arm, as well as feelings of panic. I pleaded with GPs to take me off it, but had to wait for specialist's appointment which took 10 months from the first A&E visit. In that time I had 3 emergency visits to A&E. Saw specialist, not an EP, who put me on Flecainide which works for me. Both Amiodarone and Flecainde have different effects on different people. My GP is a specialist in AF and he works with my cardiologist to give me the best treatment. Those episodes of AF which I'm aware of are now few and far between, last one lasted about 2 hours 6 months ago.

  • Thomas, thanks very much it's interesting to hear about your thoughts and experience. Good to hear that your doctors are working together.

  • I was going to have a pace and ablate this year and they were going to put me on amiodarone after, but due to my lung problems they have cancelled the pace and ablate and have said they will not consider any further heart operations and I will stay on Sotalol, digoxin and warfarin.

    I have been on amiodorone a few times since 1992 but I am always taken off it after a few months as it does not seem to sit well with me.

    I hope you get it sorted out soon.

    Be Well

  • I was on amiodarone for a number of years during which I had periods of feeling extremely unwell, usually during very hot days. The drug was also causing hair loss. I finally stopped taking it altogether, but it took months before it left my system entirely. I am now on something called Dofetilide which I understand is not used in the UK. This is coupled with diltiazem. Both seem to be reasonably well tolerated. Are you sure there isn't something else you can take?

  • In 2005 I was put on amiorderone in the hospital with conjestive heart failure...I had gotten so bad because I didn't know I had afib, I thought I had asthma since I couldn't breathe well. Cardioversion didn't work, so they put me on amioderone which would likely put me back in rhythm or at least make the cardioversion work. The good news is I went into sinus rhythm without cardioversion because of amiorderone after 10 days in the hospital. The cardiologist said I would need the med always 200mg. I took it 8 years. A new Dr lowered the dose, but I had afib again. So continued the 200 dose. I didn't have many side effects...hair loss and so needed thyroid med, and still take it. I had nightmares earlyon, and some tingling in my hands at night. These symtoms soon went away. I was fine several yrs and last yr I had afib once or twice on it and I had pnumonia twice. I was concerned my lungs were getting damaged because of amiorderone, however the Dr didn't think it was the med, but I chose to go off of it in case, with his approval. I had had annual tests on it for eyes and lungs and no problems had shown up. So now take dronederone 400mg, which is in the same family as amioderone but supposed to have less side effects. I didn't have any rhythm meds except continued Coreg and warafin after my second ablation in April. A few weeks later I was in afib so the EP put me on droderone. I seem to be fine on it. I often have ectopic beats, but no afib. I have a moniter implant, put in during my second ablation,.otherwise I wouldn't know if I am in afib. My worse symtom is low BP which makes me feel weak, but cope with it, but mostly ok, a dry cough made me think it was the dronaderone, but I'm not sure it was the cause. My heart usually beats in the 100 range. So all this tells me that being on amioderone isn't so bad, at least for me, I perhaps am rare that I tolerated it so long.I hope this helps you.

  • I commenced Amiodarone initially for approx 6 weeks prior to my 1st ablation in mid Dec 2013 and then for 2 weeks post op to give me an initial rest as it was keeping me in SR. I then started to have symptoms again within a few weeks of discontinuing it, I was tried on Verapamil and Sotolol without much improvement. So it was back to Amiodarone from mid March 2014, I had a second ablation in late April 2014 and my EP decided to keep me on the drug for a further 6 weeks to try to reverse atrium remodelling, which is what was happening. I was virtually symptom free for 3-4 weeks, now I'm getting regular palpitations throughout every day in spite of the drug. My rhythmn nurse has spoken with my EP as I not due a review until early August 2014, and I'm to stay on this until I've had another holter monitor and they've reviewed the results. I hate the thought of what this drug may be doing to me, but I can't take Flecanide or most of the beta blockers and I think my AF would go ballistic without some sort of medication.

    I too get night sweats but this could be my age , I was treated for over 4 years with HRT (discontinued) for palpitations, which I now think where probably the beginnings of my AF.

    I sometimes get a rattling feeling in my chest, but am told that it's clear when examined. I've noticed some hair loss, but nothing major as yet. I get very cold extremities and my vision seems a bit more blurred. Have had shoulder pain in the past but not sure it's to do with this drug. In the last few days have noticed my legs feel tight and a little swollen, but this maybe the warmer weather and I feel very tired lately, which I could put down to getting over a heavy cold or then again my thyroid could be knack ered. Not sure I will get a blood test at the moment as the hospital seems to think my GP will do this and visa versa. My INR seems to have settled and levelled out but of course the other issue with this drug is that when discontinued it stays in the body for quite a long time. And last but not least to add to everything else that comes with this nuisance condition, just as the occasional sunny day arrives there's no sunbathing for us Amiodaronies. It does nt get much better.

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