tikosyn??

[duanedeb]

I am 52 years old. I have non obstructive HCM. I have been monitored at the Cleveland Clinic and have been on a regime of sotolol/betapace and coumadin for 6 years. The past 2 years, I have had 6 episodes of a-fib which required cardioversion. Since then, I have been diagnosed with persistent a fib. I underwent an ablation yesterday at Cleveland Clinic. Today, I experienced an episode of atrial flutter (which I never had before) which required cardioversion to restore normal rythym. Now, they are starting me on tikosyn. I wanted to know if anyone has comments regarding success/failure with this drug. I have been reading up online today and I have some concerns. Some patients have also had difficulty getting this medication.???

Thanks!
D

[Cynaburst]

I know that Sarah, a regular contributor here, took Tikosyn for some period of time.

Here are the Message Board search results on Tikosyn. If you read here, you will find more info.

http://www.4hcm.org/forums/search.php?searchid=109545

[duanedeb]

I am sorry but the link you were kind enough to supply did not take me anywhere?

[Cynaburst]

Then just use the search feature to search "Tikosyn" in the archives.

[Sarah]

Hi Duane,

Yes, I took Tikosyn for about two years from 8/00 to 10/02. The FDA had only just approved it. In fact, I was waiting to hear from the Mayo for several months in order to start on it.

Tikosyn is only started in the hospital because it can widen your QT duration (essentially lengthen your heart beat). If the duration is too long, you can go into ventricular fibrillation. :(

It is also very important that you do not take certain other medications with Tikosyn like Cipro and some antifungals. You should have been given a list of what you can't take. Keep that list with you at all times and a spare copy at home. It is also important to have 100% compliance with your dose. Never late, never skip, never take extra.

I accidentally took two once by mistake and I spent the night in the hospital attached to the defibrillator. My heart rate went down to 40. Not fun.

I didn't experience any side effects that I'm aware of--except my QT was wider, just not too wide.

On top of all that, it tends to stop working after a few years. I stopped taking it b/c my afib would breakthrough more and more often till it was 80% afib/20% sinus.

It does work great, when it works. But it is a lot of work to take it, if you know what I mean. So while there was hope it would be a great substitute for amiodarone, it is not. Which leads me to my question: why aren't they putting you on amiodarone? I'm assuming it is contraindicated for liver or lung reasons or something like that. Or you just don't want to take. I know I don't, nor have I. It's probably the only thing I haven't taken, actually. However, now that I've been in afib for 7 years, I'm past the point of no return.

If I knew then what I know now, I might have done things differently and I would have taken amio and I would have tried an ablation (RF, not alcohol septal) or two.

DO NOT stay in afib if you can help it.

Feel free to PM me with questions.

S

[Pam Alexson]

Sarah is dead on correct. Here some.. sometimes diminish the severity or concern with having a-fib. She has told you how it is and some of her regrets.
A-fib changes the heart over time in negative ways and episodes of a-fib beget more episodes of a-fib . The longer one stays in it the harder it is to get them back in NSR. When medication works it is a wonder.. so better to get started sooner before changes make it harder. Not having the extra contribution of blood volume from the atria when one is in a-fib makes an HCMer feel ;USUALLY ... just AWFUL! Heart failure can become a huger challenge for someone already in that additional venue... or a new venue.

Not a pleasant or easy way to exist.... not to forget the high risk of stroke with severe ramifications if one survives a stroke and worse death .. These are very real and to be taken seriously.. very seriously.

Be aggressive get someone on this for you and with you asap!

Pam

American College of Cardiology/European Society of Cardiology Clinical Expert Consensus Document on Hypertrophic Cardiomyopathy

A Report of the American College of Cardiology Foundation Task Force on Clinical Expert Consensus Documents and the European Society of Cardiology Committee for Practice Guidelines

Atrial Fibrillation
Atrial fibrillation is the most common sustained arrhythmia in HCM and usually justifies aggressive therapeutic strategies (30,38,161–163,249) (Fig. 1). Paroxysmal episodes or chronic AF ultimately occur in 20% to 25% of HCM patients (30,163,249), linked to left atrial enlargement and an increasing incidence with age (163). Furthermore, it is possible that subclinical AF (i.e., identified only by Holter recording) may be even more common. Clinical cohort studies show that AF is reasonably well tolerated by about one-third of patients and is not an independent determinant of sudden unexpected death (163); however, it is possible that in certain susceptible patients, AF may trigger life-threatening ventricular arrhythmias (244,254). Nevertheless, AF is independently associated with heart failure-related death, occurrence of fatal and nonfatal stroke, as well as long-term disease progression with heart failure symptoms (38,161,163); transient episodes occur in about 30% of patients immediately following septal myectomy, often in patients with a prior history of AF (202). Risk for complications of AF is enhanced when the arrhythmia becomes chronic, onset is before 50 years of age, and outflow obstruction is present (163).

Paroxysmal episodes of AF may also be responsible for acute clinical deterioration, with syncope or heart failure resulting from reduced diastolic filling and cardiac output—as a consequence of increased ventricular rate and with loss of atrial contraction (and its contribution to ventricular filling) in a hypertrophied LV with pre-existing impaired relaxation and compliance (161–163). Atrial fibrillation in HCM should be managed generally in accordance with the ACC/AHA guidelines (272). In particular, electrical or pharmacologic cardioversion are indicated in those patients presenting within 48 h of onset, assuming that the presence of atrial thrombi can be excluded with a reasonable degree of certainty. Although comparative data regarding the efficacy of antiarrhythmic drugs are not available for HCM patients, amiodarone is generally regarded as the most effective antiarrhythmic agent for preventing recurrences of AF, based largely on extrapolation from its use in other heart diseases (272,273).

A generally aggressive strategy for maintaining sinus rhythm is warranted in HCM because of the association of AF with progressive heart failure and mortality, as well as stroke (38). In chronic AF, beta-blockers, verapamil (and digoxin) have proved effective in controlling heart rate, although A-V node ablation and permanent ventricular pacing may occasionally be necessary in selected patients. Anticoagulant therapy (with warfarin) is indicated in patients with either paroxysmal or chronic AF (7,11,38,163). Because even one or two episodes of paroxysmal AF have been associated with increased risk for systemic thrombo-embolization in HCM, the threshold for initiation of anticoagulant therapy should be low and can include patients after the initial AF paroxysm (7,38,163). Since warfarin has proved superior to aspirin in other cardiac conditions associated with AF, it is the recommended anticoagulant agent in HCM patients judged to be at risk for thromboembolism. While anticoagulation reduces the risk of thromboembolic events in patients with AF and HCM, it is also recognized that anticoagulation does not completely abolish the risk of stroke (38,163). Such clinical decisions should be tailored to the individual patient after considering the risk for hemorrhagic complications, lifestyle modifications, and expectations for compliance.

The most appropriate management for patients with asymptomatic nonsustained supraventricular tachycardia (detected only on ambulatory [Holter] ECG or exercise-testing), and associated with left atrial enlargement is presently unresolved. Also, at present, there is little experience specifically in HCM patients with emerging and novel alternative treatment strategies for AF such as pulmonary vein radio-frequency ablation, the surgical MAZE procedure, or implantable atrial defibrillators to warrant definitive recommendations at this time.

This was in 2003 there have been some advances in treatment since then...

[Largehearted]

Pam.

You never cease to amaze me with the detailed information you present. You should take up a career in research.

I am especially interested in A-fib. I am currently free as long as I stay on this high dose of Sotolol. But I also realize, as long as my LA continues to enlarge (last measurement was 4.9cm), at some point meds will not be able to keep the AF at bay.

Anyway. Thanks for the detailed info.

Leon

[cynthia]

I was on tikosyn for over 3 and a half years...no side effects...was very effective until a few months ago...therefore I had an ablation last week as I was getting many afib expisodes.... I hope this helps us both!!

[jenniesouth]

I am taking tikosyn now, and have been for at least 1 year. It didn't work at first, like the first month. then it started working suddenly and continued to work for a year. my afib is severe though, so now after 3 failed pvi ablations, I am trying to get the MAZE done at the CCF. I was on amiodarone a long time ago and it did work, I was on it for a couple years then it cause my thyroid to go hyper (overactive) and I had to stop it. I've tried everything.