Since taking Amiodarone the numbness in my left foot up to the calf and the foot of my right foot got bad feels as if I have socks on

[Shirlgal]

plus I have a bad cough going to Cardioligist 24th Feb on Warfarin and Bisophorol

[Costa-Del-Solway]

Hi Shirlgal,

This is a reply I posted on another thread the other day. Amiodarone is dangerous stuff, it was getting close to killing me. The cough I had was only when talking, did not bother me when sleeping., took 9 months after developing a cough and lost part of my lung till they found out the source of the problem.

Amiodarone is poison.

Look at the Facebook page - Stop Amiodarone

Read amiodaronetoxicity.com/...

I was on it for 6 years then started with a cough after they had increased my dose to 2 x 200mg a day, over 9 months I went thro being told I had a shadow on my lung from an X-ray, CT scan and they told me it was a tumour, PET scan then said not cancer, then had a CT guided biopsy cos it was at an awkward bit to get at, and all inconclusive. Then had a thoracotamy and removed a section of my lung and told it was not cancer it was a brown sticky stuff. A week after I was released from Clydebank Jubilee Hospital, my local hospital did another chest X-ray and it was a lot worse and spread to both lungs. After a few weeks in hospital and daily getting worse they were trying to identify what the 'infection' was, but no joy. Then after a lengthy chat with a doctor from infectious diseases asking about travel, she then looked at my medication and she thought on lung toxicity and suggested stopping amiodarone. When I read the patient information sheet provided with the tablets, all the symptoms I was suffering were listed. You don't think to read these after you've been taking something for 6 years. After a week the cough stopped, and it took a long road to recovery and get the poison out my system as it takes over a year to get totally rid of the stuff.

Now I have persistent AF 100% of the time, had an ablation last August, I was free of AF for 6 days then back into it full time. Got another ablation 3rd Feb, finger crossed this time.

[Beancounter Volunteer]

Hi Shirlgal

I am not taking Amiodarone, so this is not personal experience, but I am sure that no-one even the medics would describe prescribing Amiodarone as a decision they take lightly. And I am not even slightly medfically qualified.

It is an extremely strong drug, it has many potential side effects, and anyone who is prescribed it should be very carefully monitored by their doctors.

But It's also a very effective drug and sometimes the only one which will work for people and bring their heart rhythm under control, I feel very sorry for you Costa Del Solway and your experiences, and my understanding is that if you are under a good EP you are now very unlikely to be prescribed it for 6 years at least not without very regular testing of all the potential side effects.

Certainly go back and see the doctor with any symptoms you are experiencing, certainly ensure that you are being monitored regularly.

As for Amiodarone is poison? Maybe that's true but then isn't that exactly what we do when we treat cancer with chemotherapy?, sometimes these very strong drugs need to be carefully explained to the patient so they can make an informed risk based decision, and I would like to think that happened to you, it sounds like it didn't to Costa.

But do I want a future where one effective, if potentially difficult, path of treatment is closed to me? No, I can see no argument to stop Amiodarone, simply that it must be prescribed with the full knowledge of the risks to all parties.

I wish you well, I also wish Costa well, and I am hoping the next ablation works for him.

Be well both of you

Ian

[BobD Volunteer in reply to Beancounter]

Well said Ian. I have posted under the other reference to Amiodarone in similar vein.

Bob

[Ang3lc4ts in reply to Beancounter]

I am taking Amiodarone Ian, for me it is the worst experience of my life! Sounds dramatic I know but it makes my AF worse as I have chest and back pain, leg weakness, skin irritation and breathlessness. My Dr is well aware of all this and is keeping a very close eye on me. My INR readings are all over the place, so dosage has to change on every visit. I am seeing an EP, a Dr Slade on the 21st February at the Duchy Hospital privately as it takes up to 18 weeks to get an appointment at Treliske. The reading from my 7 day monitor showed worrying results and the consultant has suggested I am a likely candidate for a pacemaker. It all takes such a long time to get sorted.

Best of luck Shirlgal, hope you get sorted soon.

Di

[Rellim296]

I too have the sensation of wearing socks. Started a year ago with numbness in the toes when I had been on 100mg flecainide x 2 for two years. This was increased to 150mg x 2 six months ago. My heels and ankles also started to feel as if they were wrapped in clingfilm, and now I am wearing long imaginary socks, and the skin involved feels unfamiliar to the touch.

[bunnyblue]

l was on amiodarone for 18 months and felt fine, then started having numbness at night in my hands and got a terrible cough which went on for 5 months till the amiodarone was stopped, now on flecainide

[TerriN]

I am on Amiodarone. Diagnosed during a hospital stay in October, meds would not put me back in Rythmn ,tried a electro cardio inversion but had a blood clot so couldn't do it....a month later after taking xarelto they did one last two days in normal Rythmn. my cardiologist put me Amiodarone says it was a strong drug would hopefully get my heart strong before trying another cardio inversion...in two weeks I was back in normal Rythmn ....but he said from the start this is not a drug to be on long term....was back there this week did a stress test no AFib and my lower chamber which was at an EF of 30% is now at 65%.... Above normal for my age. Appointment in March with plans to take me off the Amiodarone. Short term I wasn't worried, but every med these days have side effects many worse than the condition.