Comments on: Urgent Request for UK Atrial Fibrillation Patients to Contact NICE About Dronedarone http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/ From StopAfib.org - For Afib Patients, By Afib Patients Wed, 08 Feb 2012 00:59:40 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: ann sullivan http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/comment-page-1/#comment-2896 ann sullivan Fri, 05 Feb 2010 15:18:09 +0000 http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/#comment-2896 After my first onset of AF... 8 months of persistent AF 24/7, I had an electrical cardioversion(CV) at Mass General Hosp.(MGH) in Boston then using sotalol and it lasted a week. Within a week MGH had me off sotalol and on Multaq for 5 days then CV on Oct. 5, 2009 without the three days in the hospital for sotalol and it has worked for me ( in normal sinus rthymn)...no side effects yet. My thyroid had been removed 7 years ago for cancer and I am on levoxyl...my dose did have to be slightly adjusted after Multaq but that had been happening with the other many drugs I took before the CV. Multaq works for me. The only drug left for me was amiodarone before Multaq was approved which luckily just happened to be FDA approved at the time of my first failed CV. I am concerned about the long term issues since the clinical trial test was for an aveage of about 20 months but very grateful this is working for me. My ejection fraction went from 45 with AF back to 60 after three months on Multaq. My life has been returned to me. I was pretty disabled with persistent AF. After my first onset of AF… 8 months of persistent AF 24/7, I had an electrical cardioversion(CV) at Mass General Hosp.(MGH) in Boston then using sotalol and it lasted a week. Within a week MGH had me off sotalol and on Multaq for 5 days then CV on Oct. 5, 2009 without the three days in the hospital for sotalol and it has worked for me ( in normal sinus rthymn)…no side effects yet. My thyroid had been removed 7 years ago for cancer and I am on levoxyl…my dose did have to be slightly adjusted after Multaq but that had been happening with the other many drugs I took before the CV. Multaq works for me. The only drug left for me was amiodarone before Multaq was approved which luckily just happened to be FDA approved at the time of my first failed CV. I am concerned about the long term issues since the clinical trial test was for an aveage of about 20 months but very grateful this is working for me. My ejection fraction went from 45 with AF back to 60 after three months on Multaq. My life has been returned to me. I was pretty disabled with persistent AF.

]]> By: Carl Golgart http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/comment-page-1/#comment-2887 Carl Golgart Fri, 29 Jan 2010 09:45:43 +0000 http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/#comment-2887 I was having major problems until going on multag. Un of fl Shands teaching hospital cardiac unit can attest to the real difference it made with me. please advise whhatever I can do to help!!!!!!! I was having major problems until going on multag. Un of fl Shands teaching hospital cardiac unit can attest to the real difference it made with me. please advise whhatever I can do to help!!!!!!!

]]> By: Daniel King http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/comment-page-1/#comment-2886 Daniel King Thu, 28 Jan 2010 04:52:09 +0000 http://atrialfibrillationblog.com/urgent-request-for-uk-atrial-fibrillation-patients-to-contact-nice-about-dronedarone/#comment-2886 Maybe denying patients Dronedarone (Multaq) may not be such a bad thing for this 'questionable' drug - as the V.A. prescribed it for me - but I see: 1. Numerous complaints over WILD FLUCTUATIONS in heart rate... 2. The FDA denied Approval for Multaq in 2005 after numerous deaths were caused in patients - most who had chronic heart failure episodes... 3. My checking with pharmacists at area Pharmacies - Wal-Mart, Walgreens, Kroger, etc. - finds either no patients or 1 or 2 taking Multaq... ALL OF WHICH to me seems to point to a very unproven drug - that I keep seeing negative blogs about it causing many problems !!! Maybe denying patients Dronedarone (Multaq) may not be such a bad thing for this ‘questionable’ drug – as the V.A. prescribed it for me – but I see:

1. Numerous complaints over WILD FLUCTUATIONS in heart rate…

2. The FDA denied Approval for Multaq in 2005 after numerous deaths were caused in patients – most who had chronic heart failure episodes…

3. My checking with pharmacists at area Pharmacies – Wal-Mart, Walgreens, Kroger, etc. – finds either no patients or 1 or 2 taking Multaq…

ALL OF WHICH to me seems to point to a very unproven drug – that I keep seeing negative blogs about it causing many problems !!!

]]>