Starting Flecainide

Hey everyone! I was wondering if anyone could tell me their experience with starting Flecainide? I am going for a consultation on Monday and am looking at having to start this medication for symptomatic PVC's. I have sick sinus syndrome, NSVT, and a pacemaker. I was told that I will have to be hospitalized for at least 3 days to start the medication. Any advice is welcome! And any experiences are welcome...good or bad. I like to be prepared going into things! 


15 Comments

Flecainide anti-arrhythmic medication for arrhythmia control

by Gemita - 2021-01-13 18:00:42

I started Flecainide low dose 2 x 50 mg per day and stayed on treatment for around 3 years.  At this starting dose I had no problems, although the side effects increased at 2 x 100 mg per day.  

It was not necessary for me to be monitored in hospital at the start of treatment, so I cannot understand why they have told you you need to spend three days in hospital.   Nonetheless I would certainly take up the offer so that you can be monitored for any initial problems.

Flecainide is generally a good starting medication for arrhythmias providing we do not have coronary artery disease, when it would be contraindicated.  But I expect your coronary arteries have been checked?

The only side effect I suffered was slight vision disturbances but they were not so troublesome that I had to stop treatment.  Good luck - PVCs are awful.  I also have SSS and other arrhythmias including NSVT, so you are in good company!

Thank you

by Nikki-porter - 2021-01-13 19:26:46

They said that this is their protocol and it was a common practice. I'm hoping the nurse was mistaken though! My arteries have been checked and are free from disease. Did your vision disturbances get any better or was it permanent? Thank you so much for your reply! 

Flecainide

by Gemita - 2021-01-13 19:36:18

Hi Nikki, on cessation Flecainide everything returned to normal.  It really is a very good starting med and a lot of people I met in my pacing clinic were on it with good results.  There will always be someone it doesn't suit, but generally for someone who suffers side effects while on medication, Flecainide proved fairly troublefree for me although it didn't stop my AF for which my EP suggested an ablation.  

My lower rate PM setting is 70 bpm.  I find this higher heart rate effectively suppresses ectopics like PACs and PVCs outpacing them.  I suffer fewer ectopics as a result and was able to come off Flecainide and also reduce dose of my beta blocker Bisoprolol.  You could ask your EP about suppressing ectopics with a higher pacing rate.  Can work for some of us.

Flecainide

by AgentX86 - 2021-01-13 21:55:19

I've never heard that hospital monitoring was needed for flecainide.  At one time they required it for Sotalol but no longer.  It's still required for Tikosyn but I've never heard of it for flecainide. Sotalol and tikosyn are class-III antiarrhytmics, where flecainide is a 1c.  Class-III drugs are associated with the 'T' phase of the heartbeat and as such can cause long-QT, which is extremely dangerous. Ic drugs affect the QRS (or 'R', not sure) cycle so should't affect the QT interval.  It would have to be some other reason.  If you learn more about this, please let us know.

 

I will....

by Nikki-porter - 2021-01-13 22:15:06

Thank you both for responding! I will let you know what I find out Monday. I'm really hoping my worrying is for nothing! 

Flecainide initiation of therapy

by Selwyn - 2021-01-14 06:46:57

Hospital monitoring is required as there is a risk of sudden death if you do not have a pacemaker.

You do not need hospital monitoring if you have a pacemaker fitted.

Flecainide is contraindicated with structural heart disease.

The rule is to start on a small dose and gradually increase.

There are long term side effects of Flecainide ( as mentioned by Gemita).

Some drugs interact with Flecainide - so beware!

I was taking Flecainide for some years- it caused atrial flutter, though controlled my atrial fibrillation ( sort of). I had a flutter ablation to stop the flutter and stay on Flecainide. Some physicians are super cautious and will therefore only start Flecainide with monitoring. If the dose build up is gradual and you have a pacemaker there is little risk ( as long as you don't have structual heart disease) 

 

Flecainide

by AgentX86 - 2021-01-14 22:08:36

After reading the rest of these posts, I went back and did some research.  There seems to be a split between EPs on this.  Some want hospitalization while others don't require hospital montoring but want EKGs a few days later (one I saw was an EKG after five doses).  This is the same deal as sotalol, though this is SOP for sotalol now.  Tikosyn still requires in-hospital monitoring.

I will update....

by Nikki-porter - 2021-01-15 16:27:29

I will update on Monday after I find out from my EP what her requirement is. I am truly hoping for no hospital stay but if it's a must, I won't argue. With COVID increasing in our state rapidly, I don't think they are allowing visitors for anyone in the hospital so I would have to be alone the whole time. Definitely not on my list of fun things to do. Thank you all for your responses! I'm just ready to get these PVC's under control! 

Hospitalization and covid

by AgentX86 - 2021-01-15 17:15:07

In the US, anyway, hospitals are one of the safest places to be. They keep the covid patients well away from others, particularly the cardiac patients, and have separate HVAC. No, most don't allow visitors (or are very restrictive) to make sure they stay that way.

I'd  bring my tablet or laptop and OD on Netflix. ;-)

Flecainide experience

by Whiteb52 - 2021-01-16 16:48:42

I had been on 40mg/day Nadolol for years to treat erratic "electrical" issues in my heart. I hadn't been feeling well for about 6 months and called my cardiologist.He advised me to buy a Kardia Mobile device and check my heart when I wasn't feeling well. Low and behold lots of A-fib. He prescribed Flec and I started 50mg 2x a day, then 100mg 2x a day. Luckily I was working from home because on the 3rd day I was experiencing syncope every 15 minutes. I was able to catch it on the Alive-cor and you could actually see the flat lines in my heartbeat.I sent it to his office and they advised me to immediately be taken to the emergency room. 3 days later I had my 1st pacemaker! I'm still on the Flec & Nadolol.  30 days with PM now which is set at 60. Physically my body has healed, but still working on the energy everyone mentions.  Bottomline, it's a pretty good drug.

Starting Flecainide

by AgentX86 - 2021-01-16 23:11:09

I searched stopafib.org, where some pretty knowledgeable people hang out.  The consensus of many (many) people who are on flecainide is that hosptalization is not necessary for most.  At a cost of $10,000 to $15,000 for three days, it's not warranted.  When flecainide came out, some 35 years ago, it was the norm but it's no longer called for. As others have said, it is contraindicated for anyone with ischemic heart disease or any sort of infarct.

As I said above, this is much the same as Sotalal (which does require an EKG two? days later).  According to StopAfib.org, the only antiarrhytmic drug that does require close monitoring is Tikosyn.

Flecainide does have proarrhythmic properties in some and in many others becomes proarrhythmic after some time.  It works, until it doesn't.

Flecainide monitoring

by Gemita - 2021-01-17 02:50:26

In view of the ongoing very helpful comments from AgentX86, Selwyn, Whiteb52, I would like to share the following additional information.  

When I was first discussing with my EP the several possible anti arrhythmic meds I could be prescribed to try to stop my atrial fibrillation (AF), or at least to try to control my AF as well as other arrhythmias, including benign ectopics (PACs and PVCs), my EP made particular mention of the fact that many patients can do very well on Flecainide with fewer side effects overall than would be expected from more powerful anti arrhythmic meds like Amiodarone.   

I do recall quite clearly my EP explaining however that if they found I had any form of heart disease, they could not use Flecainide because evidence had been documented that in these circumstances Flecainide could potentially be dangerous and cause SCD (sudden cardiac death).  

I would further like to add that I was started on Flecainide during an EP study (an electrophysiology study looking for my AF substrate) where IV Flecainide was administered to help stop my AF and to see whether Flecainide would be suitable.  My doctors therefore were clearly able to see the effects of Flecainide on both my heart rhythm disturbances and my heart.  They felt reassured that I had responded safely and well to Flecainide BEFORE I was given Flecainide oral medication, so in essence I did have some hospital monitoring which I omitted to disclose earlier.  

My feeling is that the safety of Flecainide and all anti arrhythmic meds should ideally be assessed on an individual basis, depending on age and other health conditions of the patient.  I was 69 on commencement of Flecainide.

The other omission is the fact that like Selwyn I too developed another arrhythmia from taking Flecainide.  Flecainide converted my AF into Atrial Flutter on many occasions, so I now have both arrhythmias.  It should be remembered that all anti arrhythmic meds have the potential to be pro arrhythmic.  In my case if I had been on a rate control medication like a beta blocker or calcium channel blocker at the same time, this might have protected me.  Completely my fault since I didn’t wish to take any additional meds.  

I note you have NSVT so it might be worth asking your doctors about the pro arrhythmic effects of Flecainide and how this might best be avoided in your case?  I am assuming you are not already taking a beta blocker or calcium channel blocker to control your NSVT?  I was told a calcium channel blocker like Diltiazem or Verapamil (don't believe they are contraindicated with Flecainide) might be more helpful for PVCs than beta blockers but of course additional meds will increase the effects of Flecainide so low doses preferably should only be given whenever possible.

Good luck for tomorrow Nikki and please report back with the latest guidance.  We are all very interested.

 

Beta Blocker

by Nikki-porter - 2021-01-17 11:32:50

I do take a beta blocker, metoprolol, for the NSVT. When I went back in October and was diagnosed with the PVC's, they increased my dosage of metoprolol and told me that if it didn’t help they would want to start me on flecainide. The PVC's have gotten worse, not better. I could dew with them better a couple of months ago but  they have increased to the point of making me dizzy and feeling like I'm getting kicked in the chest when it happens. 
 

I greatly appreciate all of the feedback that everyone is giving me. I used to work in the medical field and I am a "studier". When I'm starting a new medication or going to have a procedure done, I will spend a ton of time reading about what is going to happen as well as watching videos about it as well. I like the know the good and bad so that I can somewhat be prepared for whatever is thrown at me. 
 

I'm 36. My inappropriate sinus tachycardia started when I was 29. Everything seems to have gone downhill after that diagnosis. I get discouraged sometimes so I do really appreciate everyone's responses, concern, and help. 

Good news!

by Nikki-porter - 2021-01-18 18:28:06

The nurse was mistaken about flecainide requiring hospitalization. My PVC's have increased significantly since October. I start 50 mg twice a day of flecainide and if that doesn't help I will increase to 100 mg twice a day. I go back in 4 weeks for a stress test to see how I am tolerating the medicine. If the flecainide doesn't help, I will start Sotalol and it does require a 3 day hospital stay. 

Excellent so no hospital stay

by Gemita - 2021-01-18 19:13:12

Thank you for the update Nikki.  Good luck with 2 x 50 mg Flecainide.  You know where we are if you need to chat.  Love your profile pic.  I think everyone should have one !!

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