My saga continues

First, I should say that I continue to feel very well. I still walk almost every day, I'm able to do some minor home improvements, and I rest when I need to. Doctor has said a-fib is only evident a tiny percentage of the time.

Somehow I still think some tweaking couldn't hurt, and this time I've set my sights on meds. Funny how, when we are feeling well, we think, Do I really need medication? The fact is, taking Tikosyn (dofetilide) is just a major inconvenience. I have to make certain I take it the same time every day, missed doses are bad news, and it is sometimes hard to get. I have asked repeatedly if I can stop taking it, especially as I now take Metoprolol, but it seems like my cardiologist figures, if it ain't broke, don't fix it. It does come down to my choice in the end though, so I'm asking: Is there good reason I'd need to take both Tikosyn AND Metoprolol (don't they kind of do the same thing?). Has anyone been on this kind of strong antiarrhythmic & then stopped? If so, any major complications? Would I need special attention around stopping (like the 4 days in hosital when I started--that would certainly be a drawback!) 

I know that the final word will be,that I need to talk to my doctor about this, but if I do decide to tell him that I want to stop, I'd like to feel confident in my decision. Thanks for any comments & opinions.


8 Comments

What have you got to lose by trying ?

by Gemita - 2021-10-12 13:20:23

TLee, you continue to write so positively about your experience with Afib and with your pacemaker.  You have come a long way.

Tikosyn and Metoprolol don’t really do the same thing, although they may complement each other.  I believe Metoprolol is the important medication to control heart rate when in AFib and to control any high blood pressure.  Tikosyn is an anti arrhythmic medication, used primarily to control your arrhythmia, preventing it from starting or reducing the episodes in frequency and duration when it does start.  BUT eventually it may stop working and you would then be faced with an ever increasing need for a higher dosage, or change of medication, or an ablation.  

To answer your main question(s), I am living proof that it is possible to stop an anti arrhythmic medication without any ill effects, but I would advise you do this with the knowledge of your doctors and to do it SLOWLY, reducing gradually over a long long period of time so that your body and arrhythmias will not notice any sudden changes.  That is the key. 

My anti arrhythmic medication Flecainide did nothing for me, actually it made all my arrhythmias, including AFib far far worse in the end when it became “pro arrhythmic”.   The most important medication for you I believe is the rate control beta blocker, Metoprolol.  Stopping that could see an increase in your heart rate (and blood pressure), both of which could be fuel for your AF. 

Tikosyn is a fairly heavy weight medication, stronger than Flecainide in my opinion, so it may be doing more to control your AFib than Flecainide ever did for me, but what harm can come to you by trying to come off it, if you take it slowly. 

I had no major complications when I finally stopped Flecainide.  Actually the opposite.  I just had better control of all my arrhythmias and with better control, I found my pacemaker worked much better for me too.   I would discuss with your doctor “how to stop Tikosyn” but do it gently.  After all, you are doing so well and it is only natural that he will be concerned that any changes might affect your well being.  Work with him but be confident in yourself that you can stop an anti arrhythmic medication and be all the better without it.  Others, like me have gone down the same path, so why not you.  Great news.  You have nothing to lose

No, they are not the same! Keep the Tikosyn.

by AgentX86 - 2021-10-12 13:43:20

Metoprolol is a beta blocker, it slows the heart (and much of the nervous system) down. This slows the heart and dilates the blood vessels (lowering blood pressure). In some few cases this us enough to reduce arrhythmias.

Tikosyn is a class-3 antiarrhythmic, which works by altering the way the heart's electrical system works. They are not in any way interchangeable.

If you stop using tykosyn, you'll probably be right back in Afib, somewhere you don't want to be. Your Afib burden is low, likely becauseof the Tikosyn. You wouldn't be on such a strong antiarrhythmic if your Afib wasn't serious (or your doctor wasn't serious about your Afib). You've invested a lot in Tikosyn (three days of close observation). This isn't the time to throw it all away. It might be time to be thinking "ablation",  however.

As far as having to take them at the same time every day,  it's not as if you have to set your alarm clock. A couple of hours doesn't matter much.  Even a skipped dose isn't going to end the world, as we know it. Tikosyn has a half life of about 10 hours,so at 24 hours you'd be down from about 50% (taken on time)  to 25% (skipped dose). This isn't horrible. Every skipped dose drops that in half again.

Eliquis is similar and the consequences can be much worse. Who hasn't skipped a dose of their anticoagulant, either accidentally or under direction?

Short answer: If you are given a prescription for ANY medication, take it as directed. Your chance to find an alternative is in the doctor's office, not on your own.

 

 

Hope you come to the right decision

by Gemita - 2021-10-12 15:38:09

Good points by AgentX86.  To help you come to a decision TLee I would ask yourself some basic questions:

Is taking Tikosyn such a major inconvenience and is this the only reason why I want to stop the medication?   

Is taking Tikosyn causing any unwanted symptoms?

Is Tikosyn helping to stop my Afib?

Can I afford the cost of Tikosyn?

Do I feel well on my present treatment?

Your post clearly says that “I continue to feel very well” so that is an indication that your treatment at present is working for you.  

Of course all anti arrhythmic meds can cause changes in your heart rhythm and lead to irregular heart beats, possibly more dangerous than the arrhythmia you are treating, so you have to be aware of this and accept the risk.  On balance you have to decide what is best for you when trying to control your Afib and how long you can safely stay on any medication without fear of the medication causing a potentially serious pro arrhythmia.  That would be my main concern with Tikosyn, so discuss any concerns with your doctors.  But remember you are in control. It is your body and any decision you come to has to be respected.  You are an equal partner in your care.  

a lot of good points

by TLee - 2021-10-12 17:15:52

I appreciate the clarity. My biggest issue has been lack of information from my doctor, as far as what the tikosyn does, how long I can expect to take it & so on...I ask, should I keep taking it & he says yes, that's about the end of it. I feel like now I at least have some specific questions to bring forward. I really started questioning along these lines when, just after getting my pacemaker, my a-fib was going crazy (while still taking tikosyn), but as soon as I started on metoprolol things calmed way down. It kind of gave me the impression that the beta blocker was more effective. I do feel well with things as they are, but of course my goal is to continue to feel this way while taking the least amount of medication. Maybe I just like stirring up trouble! 

Stirring up trouble ?

by Gemita - 2021-10-13 05:10:45

No you are definitely not stirring up trouble TLee.  Your comments above tell me quite a lot, especially your comment about when adding Metoprolol to your medication your symptoms seemed to improve which indicated to you that Metoprolol gave you more relief from your symptoms than the Tikosyn alone.  That was a very good observation and would be a starting point for any discussion with your doctor/EP.  You can expect to stay on Tikosyn until it no longer works, so you are right to ask these questions.

Some anti arrhythmic meds (for example Flecainide, a Class 1C anti arrhythmic med) cannot “safely” be taken without the addition of an AV Nodal blocking med (say a beta blocker like Metoprolol or a calcium channel blocker like Diltiazem) which slows conduction through the AV Node to the ventricles.  Although our AV node “naturally” slows conduction, some anti arrhythmic meds like Flecainide can actually trigger another arrhythmia like Flutter which can cause rapid conduction to the ventricles  - this was my experience with Flecainide.   A beta blocker or calcium channel blocker at the time might have protected me (but my fault for not taking Bisoprolol as prescribed!)  

I am unclear if Tikosyn as a Class 3 anti arrhythmic med might have caused a similar effect prior to the addition of your Metoprolol?  Are you saying that when you started Tikosyn, you were not taking a beta blocker or calcium channel blocker to control any high heart rates?  If not, I would respectfully want to know why?  Rate control meds (like Metoprolol) are usually tried first with AF because they are generally safer and may be all that is needed to control the arrhythmia in any event.  I would be surprised if your EP put you straight on an anti arrhythmic med without first trying a rate control med.

From my observation it is possible that the Metoprolol is the most helpful med for your particular condition and you might care to discuss this possibility more fully with your doctor if you do decide to try to reduce your dosage of Tikosyn over time.   Metoprolol might be safer as a long term medication to help control your AF, since "control" is what I believe you are looking for.  "Total elimination" would be harder to achieve even with an ablation

I wish my memory wasn't so bad!

by TLee - 2021-10-13 13:43:45

I am thinking that most of my med changes happened around the time of my first & only cryo-ablation. It was after that that I began to have pre-syncope from pauses pretty regularly & we started discussing the pacemaker. I think they took me off metoprolol then, but I am unclear on when the tikosyn was prescribed--seems like a long time ago, but MAYBE after the ablation was unsuccessful (?). I really should go back over all records with a fine tooth comb, as I get a feeling some of this doesn't make sense. Seems like it should be tikosyn OR abaltion, not tikosyn AND ablation, but that's not how I remember it!

Anyway, I have never felt really good about it, as it has so many possible interactions & seems to require so much care in when & how to safely take it, and, no, I never noticed a huge improvement in symptoms with it. Just after pacemaker insertion, I was feeling horrible (not unusual, as this forum taught me), but since slow/paused beats were no longer an issue I was soon prescribed metoprolol once again. I felt better almost immediately. When monitoring showed I was still experiencing "poorly controlled a-fib" (even though already feeling pretty darned good), they increased the dose.of metoprolol & my last interrogation was really good.

I am sold on the beta-blocker, not so much the tikosyn, although I do understand that they may work best together. All things to discuss, and this time get more detailed answers. I think there is a deep-seated feeling that docotrs are not to be questioned, and I need to get past that! My next appointment isn't until Janauary, but a big mess in trying to even get the tikosyn from my pharmacy got me thinking about it, so maybe I'll bring it up before then.

 

Yikosyn or ablation

by AgentX86 - 2021-10-13 14:35:05

TLee, that's not really the choice.  It's Tikosyn (or other antiarrhythmic) or successful ablation. It's not at all uncommon for the first ablation to be unsuccessful, particularly if you've had Afib for a while.  At some point, it's less than 50/50 odds.  Often a touch-up is needed or in some cases one of the best ablationist EPs in the country (there are only a handfull).  Local EPs don't cut it for complicated cases. 

There are some techniques that most EPs won't even try but the top surgical EPs will use because that's where the problem is.  The side effect of this (LAA isolation) can be very dangerous (the LAA becomes a clot factory).  Because of this, even with a successful ablation, you'd still be on anticoagulants for life.  How much trouble does Afib cause you?   There is no right answer.

After an ablation, there is a ("blanking") period of three to six months where the re-occurance of Afib isn't unexpected.  During this time you're normally put on an antiarrhythmic but probably not as strong as Tikosyn.  Tikosyn is pretty heavy duty stuff, with all the dangers of a heavy duty antiarrhythmic.  Only ameoderone is higher on both lists.

Brain fog I know it well

by Gemita - 2021-10-13 15:03:37

Don’t worry about the ‘details’ or your memory.  My memory is bad too on Bisoprolol and when AF strikes.

Yes with pausing and pre-syncope they couldn’t risk giving you Metoprolol until your pacemaker was in place to keep that heart rate up.  

As AgentX86 also confirms, sometimes during the healing period (up to 6 months after an ablation), they tend to continue with rate control and/or anti arrhythmic meds to try to keep us in normal sinus rhythm and to give us a better chance to recover.  So Ablation + Tikosyn makes sense to me, especially if you were on Tikosyn pre ablation.

update I attach a link which might help answer some of your questions on Tikosyn.  It seems reloading in hospital is recommended if more than 2 doses have been missed, so not an easy med to stop and start or experiment with.  I note it has a fairly good tolerance profile although can cause QT prolongation and Torsades de Pointes

https://www.ahajournals.org/doi/full/10.1161/circep.117.005815

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