Atrial Fibrillation

[Lizilue]

I was diagnosed with A-Flutter 3 years ago by an Electrophysiologist that came to work for the Cardiology department of the Cardiologist I have been seeing for several years because of an artificial mitral heart valve. She informed me that I had been in A-Flutter for approximately one year. The only symptom I had was tiredness. I had been getting Echocardiograms yearly but wasn't informed by my Cardiologist that I was in A-Fib even though he had gotten the results of the Echo.

Anyway, I had Cardioversion which put me back into NSR but caused Bradycardia, and as a result, I had to have a pacemaker inserted. The A-Flutter came back after 9 months and I had cardiac ablation which resulted in NSR for 7 months. I had a two more ablations but the A- Flutter came back after a few months.

I am now being told I should try a medication called Tikosyn. This medication is relatively new and is very toxic so I will have to be hospitalized for 3 days so I can be monitored for an extremely high tachycardia response.

Does anyone else have experience with this drug?

[lupus-support1 Administrator]

Wishing you a speedy and full recovery.

With good wishes,

Ros

[Pooky7]

have you gotten a 2nd opinion?

[Jmkeefe]

I'm so sorry that I'm of no use. I don't even know that Dr's specialty or what that med is like. I know I have a rythum problem yet to get diagnosed and my 16 yr old is going in next month as she has what they worry is NSR episodes where her pulse goes past 220. It is scary as hell and to add a scary med on top of that doesn't help I'm sure. Having lived on mental health meds since I was 16 I can say that sometimes the cure can seem worse than the disease but sometimes it can be a matter of life or risk of lack thereof.

Is there absolutely ~no~ other options left to them other than the med that is worrying you?

[37Polly]

I took Tikosyn successfully for six years. Works very well for some of us. The testing in hospital and periodically is to make sure your qt line in ECG doesn’t get too long. Mine never did, but Tikosyn began to fail after so many years ( no side effects) and at my age everyone worried. I had an ablation 8/23/24. So far it has worked. No afib or aflutter. I did develop pneumonia and subsequently pulmonary edema, a whole other story told elsewhere. Still recovering, but Tikosyn was really effective for years.