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Hi all I'm newbie. Anyone here have lung damage due to Amiodarone treatment?

DizzyD profile image
12 Replies

Rather than going into too much detail I will keep it brief. Was prescribed Amiodarone for AFib and took it for a total of four months six days. After being on it for 3 months I started coughing mostly while asleep. Also started to get really bad pain in left lung lobe that was much worse if I lay on my back. Laying propped up eased intensity of pain but it did not go a away. During day time had continuous ache all over lung area back and front....behind rib. During day also that in difficulty breathing...shortness of breath, could not get enough air into my lungs. Could not take deep breaths so have no idea if taking a deep breath was painful or not.

Strange thing is the symptoms would ease off for week or so then they would come back again. Had a few xrays at a+e and told they were clear. Strange really, because I have pre-existing scarring on lungs due to having covid delta variant few years back, before taking Amiodarone..would covid scarring show up on xray? Scarring due to covid never caused any problems.

Side effect of Amiodarone causes pulmonary problems that can't be reversed. Can't understand why it comes and goes after goes after about a week.

Incidentally, I was on Amiodarone for exactly 7 weeks an 3 days.

What should I do? Does anyone on this forum have lung problems due Amiodarone usage?

Really would appreciate some help and advice

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DizzyD
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12 Replies
Badbessie profile image
Badbessie

Lung damage is quite a rare side effect of amiodarone. As anyone referred you to a respiratory specialist. They would probably have far more experience in dealing with this than your GP or A&E. If it was me in your situation I would ask to be referred in regard to damage from COVID and medications. There are a number of treatments that could help.

sassy59 profile image
sassy59

Welcome to the forum DizzyD and I agree with Badbessie, you do need a referral to a respiratory specialist. Hope you get the help and support you need. X

As this is a cardiac drug for AF you need referring asap to the cardiologist who prescribed it as it obviously needs changing because of the side effects which it has given you. Also I agree with the others that you are seen by a respiiratory consultant to find out if there is any damage. Insist,insist insist. GPs know a little bit about a lot of things but they are not specialists in anything and so we have to be very proactive in getting the right treatment.

CDPO16 profile image
CDPO16

Just saying hi and welcome. I have nothing to add to what advice others have already given but I wish you luck in getting things sorted.

Alberta56 profile image
Alberta56

Welcome to this friendly forum. You've had some excellent advice from some of our most respected members. I hope it helps you get sorted.

Reading4everyone profile image
Reading4everyone

Hi DizzyD just one thing add, at the very least you need a scan. X-rays don't show all the detail that a scan would. I am sure respiratory specialist would arrange that for you. best wishes Marlybee.

notthemamma profile image
notthemamma

Hi there, they are only now looking into my worsening cough, bubbly upper respiratory and shortness of breath. Suspected amiodarone damage. Have been on it since 2019! Waiting for cardio follow up, have atrial fibrillation which is why I'm on amiodarone. Oh joy. Also referred for ambulatory oxygen. Will let you know how I get on. Take care.

DizzyD profile image
DizzyD in reply to notthemamma

Hi lovely yes please let me know how you get on. It totally messed up my thyroid levels. Was told i could only be on it for six months...but this was cut short due to thyroid issue. Have to admit it was brilliant for afib though. Afib hitting with a vengence now, been off it since august so this has taken priority over getting lung issue checked out. Hopefully, i could be getting a mini maze procedure on NHS in a few weeks to treat afib. Perhaps you could look into this treatment! Its the best option for afib. Are you still taking amiodarone? So hope you get your lung issue sorted asap. Keep me updated if you up to it..

AsthmaandLung profile image
AsthmaandLungAdministrator

Hi and a warm welcome to the forum.

Do give us a call at the helpline if you would like to chat to one of our Clinical Team for advice.

We are here Mon- Fri 9.15 -5pm on 0300 222 5800.

asthmaandlung.org.uk/helpline

Take care

Helpline Team

Nightmare2 profile image
Nightmare2

My husband has been on amiodorone for over 3 years, his breathlessness has reached an all time high, been treated or lung infections after lung infection. now in hospital with severe breathlessness, and just had a scan as they are concerned knowing the damage Amiodorone can do to lungs which is irreversible. He wants answers he said, even if scan shows no scaring and defo wants off this drug, he has AF but has never been told his condition warrants the most aggressive meds for it, i.e. Amiodorone, i have AF and manage on Bisoprolol which seems to be the drug most with AF are on. I would never go onto Amiodorone, just far too risky. but we learn the hard way dont we.

DizzyD profile image
DizzyD in reply to Nightmare2

Horrendous story lovely. So sorry to hear about your husband. Amiofarone os a last resort drug. Wny was he put on it in the first place?

Nightmare2 profile image
Nightmare2 in reply to DizzyD

He has COPD for a few years now, and the AF. He did have two episodes of AF that necessitated him being taken into hospital to stabilize it, he was on Bisoprolol at the time, but for some reason Cardio took him off it and put him on Amidorone.

Since writing the above, he has now had the lung scans and they find that there is no scarring caused by this dangerous drug, he has asked to be taken off it and back onto Bisoprolol but told he has to speak to his original Cardio and reminded that this drug takes months to leave a persons system anyway.

My advice to anyone with AF is steer clear of Amiodorone, they play down the side effects but it seems to be not such a low risk as they claim it to be.

I am on bisoprolol myself and would refuse Amidorone, as you say its as a last resort they say only given when other meds controlling h.rate fail, well this was not the case with my husband, the bisoprolol was working. I never just take my drugs, i research all of them given to me and query why.

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