When to Increase Flecainide?

[mommabearuk]

I Have been on Flecainide now for three weeks. First week AFib continued daily ( it had started coming daily but with odd hour breaks between attacks in month before starting. Put on 2 x 50mg daily.

No change first week but then second week they stopped and no attack for 6 days then one day attack and did not feel as ill/tired as usually was these past 6 months ( diagnosed April 2024) but took nearly 4 years to convince GP to test me and not just say stress/anxiety etc.

This past week went 8 days with no attacks, then today hit with a bad one. Yesterday felt so tired could hardly stay awake and today AFib ( previously, I often was very tired the day before an attack and then during it.

Had a checkup at GP for my diabetes on Thursday and of course, they asked about AFib. |i mentioned how it had been was was told I can up them to 100x2 daily if I wish as even one attack a week is one too many.

So I don't want to rush to take more as who knows how long these will work, so I

want to try and get maximum benefit from them ( still take 1.5mg Bipropolol with 2.5mg as PIP).

As GP has left it to me and I do not know enough about this med ( or any AFib except those mentioned as they are all I have ever had) I don't want to put them up if there is a possibility of the 50x2 daily might be enough to stop them.

So wondering, those who take or have taken them, any idea if they build up their power over time as some meds do making it best to give a month or two before considering uping them or should I accept 50x2 daily is not enough to stop my AFib and go up to the 100 x2 daily.

So far not noticed much in the way of side effects except some dizziness. Still no energy, but assumed as it is early days body will need to recalibrate on working without AFib most of the time.

Plus, diabetes is no longer staying controlled on drugs and the tablets I take, so going to be put on some other type, but I have to be educated on them as they can cause low blood sugar verysuddenly, not something I really have dealt with to date so no real idea what to do, so see Diabetic nurse for training on 14th.

Anyway gone off course. Any feedback? I know no one can tell me whether to up or not but are you willing to share any knowlege gained from being on them. GP just told me to look online for info.

Thanks x

[mjames1]

At three weeks, your dose of flecainide should've fully kicked in, however, giving it another couple of weeks before upping the dosage is very reasonable.

Meanwhile, you should ask about a PIP dose of Flecainide to bring you out of afib quicker.

You also should seriously consider getting a home EKG device to record these episodes. Not only will it help you determine if you're actually in atrial fibrillation, but it will document them for your doctors so they will not give you a hard time.

If you can get your GP on board with all this great, but ideally, you really want an electrophysiologist (ep).

Jim

[mommabearuk in reply to mjames1]

Thanks. I do have a Kardiomobile - the kids bought it for me for my birthday last July as it was after when I was diagnosed and it looked like a good thing to have. So it is using that, that tells me I am actually in AFib not guessing and have shown the GP and the Cardiologist ( discharged now once he decided Flecainide was ok for me to have. Which I admit surprised me as he had no idea if it would work or if I could tolerate it but that is NHS nowadays, I guess.

The cardiologist had said in the first appt ( only saw him twice) that he would arrange for me to have tests and then see an electrophysiologist but when I went to second appt I had just gone into AFibm this was Feb when AFib attacks were making me feel so ehusted, breathless, dizzy and so he changed his plans and said my quality of life was unacceptable so to have more tests to check I can take Flecainide instead of the pacemaker ( I have Braycardia when not in AFib ) and anything else he had planned.

[BobD Volunteer]

Nobody here should advise on such matters as we are not medically trained nor have your medical history before us BUT do know that the absolute maximum flecainide in any 24hour period must note exceed 300mg. Also here in UK GPs should not prescribe this drug without consultant level instructions so maybe best discuss with your cardioliogist.

[mommabearuk in reply to BobD]

It was a cardiologist that prescribed it but then discharged me back to GP with no idea how it would work for me, so GP is only port of call I have. As explained not asking for medical advice just feedback from those who have taken Flecainide, Thanks

[ForensicFairy]

I’m a little surprised any GP would be comfortable with ‘leaving it to you’ to determine when you should increase it. Flec is a drug which should be taken under the guidance and monitoring of a cardiologist.

[mommabearuk in reply to ForensicFairy]

As Cardiologist prescribed it then discharged me back to GP - not officially just did not see any reason I needed to attend clinic any more so technically I guess I am still under them. So my GP who admits he is not a cardiac specialist but has been doing some reading up and if I push it I know he will contact the specialist again, already did once as when Cardiologist told my GP to give me the Flecainide he did not put what my dosage was. It appears to me anyway that cardiologist thinks Flecainide is a wonder drug and it should solve all my problems, he told me he was giving it to improve my quality of life. Maybe at 68 he thinks that is all I want or need and would rather give his time to younger people.

[Vonnegut]

We know that we are all different. I do not have diabetes and am 81 and my heart is controlled very well with Flecainide, originally prescribed by an EP. I have been able to reduce the first dose of the day to 50mg and take 100mg at night and have been virtually AF free for a few years. As I recorded here recently, I even remained AF free when I forgot to order my Flecainide in time and went one day without the first pill of the day.

[secondtry]

My suggestion is an early private appointment with a trusted cardiologist (if funds allow, say £225) to discuss upping the Flecainide to 100mgs x2 daily (a medium dose) and any other concerns you have; write down all Q's beforehand and don't leave the appointment until you have written down all the answers - ignore diplomatically attempts to rush you out of the door! The sooner all AF episodes are stopped the better.

Somewhat weirdly when I was started on Flecainide 50mgs x2 daily and had 2 episodes a week 2 cardiologists offered me an ablation straightaway with a 70% success rate without even considering raising the Fleacinide dose. I had to suggest this and it worked v well for 11 yrs for me as I had Lone PAF, no comobidities and made a ton of lifestyle changes.

Hope something there helps.

[mommabearuk in reply to secondtry]

I had been thinking about this and will look into having just one private appointment with a cardiologist as so many questions but the twice I saw Cardiologist at LCHC I was not given anytime to ask questions, both times I was so rushed through and my GP just doesn't have the knowledge. Funds are tight but be worth cutting something for my health.. I have made as many lifestyle changes I can but am so exhausted 99% of the time it is hard to keep up exercise which frustrates me. Thanks

[Cliff_G]

Flecainide can do two things to the ECG which cardiologists don't like - extend the PR interval (the time the electrical impulses take to go from atria down to the ventricles) and widen the QRS complex (the time the ventricles take to contract). There are clinical maxima for these and increases in Flecainide should always be checked afterwards by ECG. Yes, 300mg/day is a theoretical max, but may still be too high according to an ECG.

It may be your cardiologist said/wrote to your GP that you can safely go up (as mine did post latest ablation - I was discharged on 2x50/day and was told I could go to 2x100/day if needed).

However, other things can affect these ECG parameters, such as other drugs. My EP eventually said I can go to 3 x 100/day as 2x100 wasn't enough, but he arranged an ECG for 1 week later, the result of which he was unhappy with. It also produced a very unnatural-feeling heart beat. So I was reduced to 100 a.m. 150 p.m. and taken off Diltiazem (this also extends the PR, though not affecting the QRS). This appears to have done the trick for me.

I think it's definitely worth checking with your GP as to whether you need a check ECG for your cardiologist once you're on 200.

[Corazon17 in reply to Cliff_G]

Would you have any idea what the "concern-causing changes" in QRS and PR numbers might be?

Would you happen to know where a layperson might guess these numbers on his or her Kardia 6L? That is, which of the six "levels" that are shown when you do "thumbs on knee"?

Thank you for your helpful comments!

[mommabearuk]

Thanks, yes I think you are right I will ask my GP to demand I see Cardiologist again as the last appointment with him I had AFib and felt so ill I was not in any state to ask questions ( why I ended up with the drugs and no dose) and need to find out what is going to happen with my Bracycardia as well - have it HR approx 40-44 - when not in AFib.

[ian16527]

If you are still getting AF on 50mg twice daily then it may be a solution to go to A&E as I did when my PIP dose of 100mg wasn't working as it should. I went into AF in A&E just as they were going to send me home ( I was getting attacks daily)

Cardiologist called down and admitted me and was started on 100mg twice daily and monitored overnight. I would not just up the dose.

Alternatively ask GP to ask for Cardio opinion - this is available at my nearest hospital and they get back withing the day usually