Amiodarone and coughing

[Harfly]

Well after seeing the cardiologist again I agreed to commence Amiodarone which I started on Monday on the usual front loading dose of 200 mg X 3 times daily. Since Tuesday I have terrible trouble sleeping and now today I have started a terrible cough. Now not sure if they are side effects of the drug given it is early days, thoughts my fellow AF members?

[Mickey16]

Hi Harfly, I had terrible trouble sleeping, (3 hrs only a day) and developed a cough also very quickly from starting Amiodarone. It also started coating my lungs and made me quite ill. I had to stop taking it as it was also not keeping me in sinus rhythm. It does not suit everyone. Read the leaflet that comes with it and seek medical advice promptly if you are unsure.

Kind regards,

Mickey16

[Harfly in reply to Mickey16]

Many thanks how long did youhave the cough before seeing your GP. I am thinking of going in on Monday if the cough continues over the weekend. Is that too soon?

[Mickey16 in reply to Harfly]

I didn't put two and two together for a few weeks and by the time I did go to the Doctor, there was no doubt it was caused by the Amiodarone as other known side affects had kicked in as well.......

[resqme1065 in reply to Mickey16]

I had the exact opposite effect. I couldn't stay awake during the loading phase. I would wake at 10:30 am from the night. I would shower, get ready, and by 1:30 had to nap. I would wake up around 6:20. Then, I coudn't sleep at night. I too have rather bizarre dreams, very vivid. I developed a cough. Thought it may have been from ablation. Put me on colchichine as an anti-inflammatory. Still coughing but not as much.

Now the echo shows my mitral valve regurgation is severe. Having a scope echo in a week to determine if this is indeed true.

I hate this drug but nothing was bringing me into rhythm since ablation in February. My left atrium is severely enlarged as well. Pretty normal from too much afib.

The only drug that is similar is Multaq. However, it has proven to be very ineffective with many intolerable side effects as well. I took it for 3 months and it did not help much. It cost over $500.00 a month!

[Mickey16 in reply to resqme1065]

Hoping you get answers soon.

Regards.

[Roony39]

Hi Harfly, I am also on Amiodarone started in May ( pre second DCCV in June )I also had trouble sleeping, which I put up with for 2 months thinking it would get better, it didn't , so my dose was halved to 100mg, sleep got better after about 6 weeks on lower dose, I had a couple of weird dreams as well as sensitive to sunlight. I also had a cough but that stopped 2 days after stopping ramipril and starting candasartan instead. I lasted in nsr until October. 🙁

[Harfly in reply to Roony39]

Many thanks I am just not sure what to do, is what I am experiencing normal and do I have to wait until I front load before seeing doctor?? This is awful.

[Roony39 in reply to Harfly]

Hi harfly , give your gp a call on Monday , ( can't do any harm to discuss your feelings/side effects, there is no normal with amiodarone , we all react/ tolerate differently to drugs, I put up with it but when I was at the end of my tether due to lack of sleep my arrhythmia nurse said we have to get the right balance of quality of life and keeping me in nsr. I hope this helps ! X

[Harfly in reply to Roony39]

Thank you so much for your guidance. Slept about 3 hours last night and have blinding headache this morning...... cough, cough, cough!!

[P0rtnahapp1e]

Hi @Harfly, funnily enough I had a discussion with my heart failure nurse about this yesterday. I was on Amiodarone for a few months and had a bad cough which was temporarily relieved by sipping water. As I'm on a limit of 1300 ml of fluid a day I had to change to another drug as it was leaving me with very little quota for tea, coffee etc.

Was reminiscing about this yesterday as my nurse and I were musing about how some patients stick out side effects as long as they are no worse than the original illness, when I asked why, if so many people have adverse effects to Amiodarone, are they prescribing this in the first place? Money. The substitutes are more expensive so everyone is tried on the cheaper alternative first!

[Harfly in reply to P0rtnahapp1e]

Oh this is very interesting and you are probably right as a staff member with the NHS in Scotland the efficiency savings are being made across acute community and pharmacy services to name just a few. Interestingly after having such an awful night I took two big spoonfuls of covonia and I am not feeling as bad or coughing as much..... mmmm.... probably combination of being upright and the amount of sugar in covonia... many thanks for your reply I will see how I get on over the rest of the weekend and will call GP on Monday.

[P0rtnahapp1e]

Another factor to remember is that the coating on your lungs takes a long time to disperse. I still have remnants of my cough some months later

[Hidden]

Amiodarone and Dronedarone can cause a dry non-productive cough that will clear. However, in around 6 in 100,000 cases those drugs can cause cryptogenic organising pneumonia (COP) / pulmonary toxicity that can be misdiagnosed as community acquired pneumonia. Clinicians will attempt to treat this with antibiotics that will have no effect. The only treatment is high flow oxygen and a corticosteroid, with subsequent treatment by oral prednisolone. I've been down that path.

Your clinician needs to check your blood oxygen (SpO2); you can also measure this yourself with a little device that you put on your finger. If it's above approx. 93% it's not a problem at that stage. If it's below that you should have a chest x-ray as the reduction in blood oxygen falls rapidly from 90%. If it is COP the x-ray will show a mass in one lung, probably the right lung. Note that if you have good lungs from exercise, your exhalation power measured with a spirometer is still likely to be above average, so it's not necessarily a good diagnostic tool.

You are probably OK, but if not and COP is suspected, your clinician should speak to the North Bristol Lung Centre at Southmead Hospital, Bristol where I was treated. The clinicians who are aware of this are: Professor Millar, Dr. David Smith, and Dr. Andrew Medford.

You probably don't have COP but if you do, it needs to be dealt with promptly. I wasn't until my third admission when they wanted to admit me to the ICU, that I was seen and diagnosed by the team from the North Bristol Lung Centre who were great and literally life savers.

[Hidden]

I forgot to add that COP will cause a crackling sound when listening to the lungs through a stethoscope. I had reoccurrances of COP whilst being weaned off Prednisolone, and my wife could tell by the sound of my cough that COP had returned.

COP secondary to Amiodarone and Dronedarone is such a rare event, that my GP told me to take all the pertinent letters with me when I had a holiday in Cornwall as; "...they won't have heard of it..."

[Harfly in reply to Hidden]

Many many thanks for all this info it really helps and makes me much more aware.

[Hidden in reply to Harfly]

My pleasure. My cough showed up within two days and it was thought to be Legionaires as I'd showered in the gym. Fortunately I had a GP who didn't back off. During the second admission to hospital I was told;" we don't know what you've got and we're running out of drugs to treat it". They discharged me after 11 days without any medication or follow up. At the subsequent blood test for creatinine my GP measuered my SpO2 at 78% and arranged for me to be immediatley admitted to the "Hot Clinic" at Southmead Hospital where they diagnosed COP as Professor Millar had checked my x-rays before I arrived. At 1:30 a.m. they asked permission to ring my wife as they wanted to take me to the ICU, sedate me and put me on a respirator. I was subsequently told that I had been close to death.

You probably don't have COP but you need to be aware as trying to convince clinicians - especially junior doctors - that you have COP is an uphill task.

[Harfly in reply to Hidden]

Wow you really have been through the mill mist have been so frightening for you and your wife. Thank god you have recovered from what must have been an awful experience. Let's pray that I don't have the same experience. Thanks

[groesclose in reply to Hidden]

What a story! Thank God you're still breathing. Just goes to show. We put our lives in incompetant hands sometime. Hurray for your g.p. he deserves a medal. So, so rare to find someone who cares these days. Hope you continue to improve.

[Hidden in reply to groesclose]

That's kind of you. My GP retired and his replacement and I have now got used to each other, as he invited me along to a Q&A with some medical students where they had to determine my medical history. Talking of caring people, I must mention my consultant neurologist Dr. Martinovic. Whilst I was being thrombolysed after the stroke, I could see her holding my wife's hands and reassuring her. She's also kept in touch with my GP and, she has advised me on what exercise I can and can't do. Care in the NHS is alive and well!

[Hidden]

Thanks for that but the thing is to enjoy life. The hospital admissions for COP were in 2014. In 2013 I was walking around (slowly!) with three hernias (from a gym workout) one of which was an occult femoral hernia that only occur in less than 1% of men and require emergency surgery; it wasn't discovered until I had keyhole surgery for the other two. This July I had stroke despite good medical stats and lifestyle; that left me blind on my right side. However I've just been filmed clearing scrub with a volunteer group in the local nature reserve. There's no time to be miserable or dwell on things!

Happy Christmas and let's all enjoy life to the maximum whilst we can, there's no telling what will happen tomorrow. I hope that your AF and the cough are sorted ASAP.

Namaste

John

[Harfly in reply to Hidden]

Oh thank you for your kind wishes. I had a mini stroke in Aug this year and thankfully with no after effects. As you say pick yourself up brush yourself down and get on with it...... life is certainly too short if you don't mind I will keep you updated. Merry Xmas

[Hidden in reply to Harfly]

Keep in touch and that includes about your mini-stroke (TIA). Just as there isn't a one size fits all in the AF forum, that's also true of the Different Strokes forum too. The more that we share our knowledge, experiences and frustrations the better that we can approach life and cope with our ailments; isn't it great when we are not alone even if it's emailing people in the forum who we've not met? It's not a good place to be when there isn't much support and you have many questions; you may have found that after the TIA. I had brilliant yoga teacher who said that we need to learn from our experiences and, there are teachers all around us.

So it's the "Strictly" final tonight on television, a glass of tawny port and a mince pie!

Happy Christmas, a great New Year and, may all of us in the AF forum be as healthy and happy as we can be!

[Harfly]

Oh that's awful. I will call doctor on Monday and I will look up side effects thanks

[PhyllisK in reply to Harfly]

Hi Harefly,

Just thought I would share my experience of Amiodarone with you. My EP prescribed this medication and after a few days I started to have a ticklish cough. Sadly I could not change my medication because I have tried most medicines and Amiodarone is the last chance saloon. The E.P did lower my medication from 200mg to 100mg daily and, advise me to take a cough linctus. I am really sceptical about cough medicines but, low and behold after a couple of days of linctus Codeine my cough disappeared. Maybe the lower dosage of Amiodarone did the trick, or the Codeine helped, who knows but I have been cough free since.

Good luck to you on your AF journey and I hope you have a wonderful cough free Christmas. Phyl

[Harfly in reply to PhyllisK]

Thanks for your reply. Well today I woke up with a really heavy cold and I have spent most of the day which has done me the world of good.....still have a cough but I am now convinced it's due to the cold will keep an eye on it over next couple of days.

[Hidden]

The clinicians worked on me through the night after I refused to go to the ICU; I'd read that there is a 50% chance of survival if you have pulmonary toxicity and they sedate you and put on a respirator. Later that day I recall my wife and best mate sat around my hospital bed whilst the doctor said that the prognosis for my lungs was not good. I had masses in both lungs. After being discharged it took 18 months to wean me off of prednisolone as COP would reoccur every time I was at 5mg a day. I used a red Powerbreathe, walking and eventually a Concept 2 rowing machine to get my lungs in working order. Through all this I had great aftercare from the North Bristol Lung Centre and, I gave permission for a paper to be written. My SpO2 is now 99% to 100% despite being 70, so pulmonary fibrosis isn't necessarily the end of life. Amiodarone can also have a rare adverse effect on the liver, hence the need to measure the creatinine / liver function. I know how lucky I've been and I must not take Dronedarone or Amiodarone. My EP at that time replied by email that my cough could take three weeks to clear (I'd only seen his nurse practioner at this point). I'm lucky that my GP took greater interest.

It's easy to think it's only a cough and in the majority of cases it will be. However, get it wrong and the consequences are serious but, trying to convince the medical community is really difficult. I hope that the paper written by the North Bristol Lung Centre will change that and, as Professor Millar leads the Academic Respiratory Unit, it should have a higher profile.

I would suggest that anyone on Dronedarone or Amiodarone has an oximeter (around £30) and monitors their SpO2 everyday. Ideally you need to know your SpO2 before you start taking the medication. I had used an oximeter as part of monitoring recovery after exercise, and my GP used one to amongst other things detect AF via the pleth display.