Afib progressing

[Kennyb1968]

So, I have had PAF (probably vagal) for about 5 years. My incidents have gone from once every every few months to about weekly in the last few months. Stress is usually my trigger and incidents usually take place during the night or first thing in the morning. I was using 200mg of Flecainide as PIP which calms the Afib in about 2 hours or less. I went for a private cardiologist appointment and he recommended I move to 100mg of flecainide twice a day with 100mg taken in addition if I have an incident during this time. I moved to that about 2 weeks ago and it was working brilliantly - no ectopic and really strong regular heartbeat. However I have had 2 incidents in the last 3 days, one after a long stressful drive and one in the middle of the night last night. Took the additional 100mg on both occasions and NSR restored in around an hour or less. I am considered an ideal candidate for ablation (fit 53 year old with no heart defects) and that's what I intend to do although I can't afford the £15K to have it done privately. I have been told that in switching to a preventative dose of flecainide it can take a while for it to give a reliable protection against AFib. Does any one else have experience of that?

[BobD Volunteer]

As you already appear to know from your title, AF is a progressive condition. Sounds like a good time to go the ablation route although you must understand that any and all treatment is onlt for quality of life and may need repeating. Better now before your AF becomes persistent.

[MummyLuv in reply to BobD]

Agree with Bob, treat early for the best chance of a decent period AF free. I was not diagnosed until I was already persistent your treatment options then are much more limited. Good luck, sounds like you are an ideal candidate!

[Kennyb1968 in reply to MummyLuv]

Cheers - hope you are recovering well

[Kennyb1968 in reply to BobD]

Cheers Bob - always brilliant and honest advice

[mjames1]

When my afib progressed from monthly to every 4 days I was put on 50mg Flecainde twice a day (bid). Instructed to take another 50 flec if I went into fib. Then wait an hour and take another 50 if still in. I was also put on 120mg diltiazem ER as an AV Nodal Blocker for protection. The nodal blocker is fairly common when you take Flec because it can help soften a very fast 1:1 flutter that flec sometimes will trigger.

The first week was rocky with several episodes. The PIP dose worked quickly and only really needed the 2nd pill once. )

4=5 episodes the next couple of weeks so my flec dose was upped to 100 bid. I didn't do well on that dose so went back to 50bid.

I have been afib free for 10 weeks on the lower dose and in fact for the past three weeks only taking 25 bid. (I split the pills). Because of such a low dose my doctor has allowed me to stop the diltiazem. However, when I feel "jumpy" or very stressed, etc. I will sometimes take another 25mg prophylactically and then 30mg diltiazem fast acting tabs.

Keep in mind we all react to drugs differently and my 25mg bid dose is lower than anything I've seen posted here but I did see where it was used in a study and only a few percentage points different from 50bid which is commonly a starter dose.

So based on this (and what my ep said) I would give the flec a little more time.

And based on my personal experience, you don't necessarily have to wait until you have an episode to take the PIP dose. Maybe take half of it when you feel stressed if that is ok with your doctor.

And lastly, and this is just opinion, I think most of us are cookie cutter prescribed both drugs and doses. So, if you have a good no afib streak at 100 bid, consider lowering it with your doc's approval. Of course if you have no side effects and it's working, maybe no reason.

This is not to say you shouldn't have an ablation but hope this helps in terms of Flecainide.

Jim

[Kennyb1968 in reply to mjames1]

Jim - that's very informative, kind and reassuring - thank you

[Hidden in reply to mjames1]

Mjames1. Can I just ask you what the problem was with 100 twice a day Flec? I've just been put on this as 50 twice a day was not working for me. All seems to be good but early says. Hope you are feeling well.

[mjames1 in reply to Hidden]

I was doing some walking on the treadmill, then a few body weight lunges and didn't feel right. Later, walked up a flight of stairs and noted a higher heart rate than expected. I had my Kardia ready and recorded "Wide QRS' which is one of their advanced determinations you pay a monthly fee for. Wide Qrs complex can be associated with Flecainide, My ep confirmed the Kardia reading and said the wide qrs was probably cause by Bundle Branch Block, something that sounds worse than it is. Anyway, he wanted me to drop down from 100 twice a day (bid) to 50bid until I had another stress test. I decided I didn't want to continue on the 100bid anyway, so still haven't had the stress test. Now I'm down to flec 25mg bid and it's holding fine and my heart reacts well to light and moderate exercise. Every situation is different.

Did some research and found that some ep's require an ecg and even a treadmill stress ecg after an increase in flecainide dose. I think this is smart especially if you're older or your heart is not running a hundred percent other than the afb.

Jim

[Hidden in reply to mjames1]

Thanks, I'll look into this with my doctor.

[mjames1]

PS if you convert that quickly you are a long way from persistent so have time to make a decision about ablation.

Here on the other side of the pond, you're not persistent unless your afib episodes last more than seven days. And even then, you're not long term persistent where the odds of a successful ablation really drop off.

Newer techniques like pulse field ablation are coming soon (actually avail now in some European centers) so it really is a complex decision whether to have an ablation and how long to wait. In general, the sooner the better, but an argument in your case could be made to wait a litle longer especially if the Flec starts to work. No easy answers and in the end a personal decision.

Jim