Now what!

[Hylda2]

Wrote about coming of Flecainide. Arrythmia nurse just rang, consultant says if I want to. Not very helpful! 300 on the list to see him before me.

So it’s go it alone I guess.

Thank you everyone for your advice. Di 😢

[10gingercats]

It sounds unbelievable there are 300 before you to see your consultant. How about asking to see someone else or if you can afford it to go private?I rate health very highly and will sacrifice a lot to achieve the best I can get.

[Hylda2 in reply to 10gingercats]

Apparently he has been working on his own for two years

[Hidden]

Hi Di, the only thing I can add is that according to the speakers who have talked about Flecainide at support group meetings, unlike with beta blockers, there are apparently no medical reasons for being weaned off the drug. That said, you are on a very high daily dose so there may be some logic in reducing the dose over time. If I were you (apart from having second thoughts about having an ablation 😱), I would see what the pharmacist says. Whatever you decide, hope all goes well

[Hylda2 in reply to Hidden]

Thanks John

[mjames1]

If the flec isn't working anyway, no reason to wean like with beta blockers. As long as your doctor is OK with it which apparently they are.

Jim

[jeanjeannie50]

I've come off of Flecainide twice. The first time I just stopped immediately and put up with a few odd beats at the start, then I had a normal heart rate for about 8 months. The second time, about a year later, I gradually weaned off my Flec and my heart rate took off badly before I could stop completely, so I had to abandon that idea.

For some reason my EP didn't think it was a good idea to take Flecainide for too long. He said try and get off of it even if you have to increase your beta blocker. I still take it though at 75mg morning and 100 at night. will try again at some stage, too much going on in my life at the moment.

Jean

[Hylda2 in reply to jeanjeannie50]

I am fiddling with my thyroid medication at the moment. Once I’ve had my test results after Easter will sit down with pharmacist at surgery( hopefully) and see what he suggests.

[Hylda2 in reply to jeanjeannie50]

150 last night, 150 this morning now in AF! That’s every other day now, can’t see the point of continuing with Flecainide

[jeanjeannie50]

That's, quite a high dose of Flec to keep taking isn't it, especially if it's not doing anything.

[jeanjeannie50]

Do you take it alongside a beta blocker?

[Hylda2 in reply to jeanjeannie50]

1.25 of Nebivolol. Heart rate usually very low

[Bingofox007]

I stopped flecainide without any ill effects, didn’t wean off, just stopped on cardiologists advice. Had more flutters on it than off. Self referral private consultation fees in this area, Essex, with Ramsey healthcare are up to £250. It’s a lot of money but you may get some answers and reassurances you are looking for without the long wait. If you can get copies of ECGs and drs letters it might cut out the need for private tests. I wish you well. Take care ❤️

[Hylda2 in reply to Bingofox007]

Thank you. Unfortunately every time I mention my heart to a Dr I get referred back to the hospital 😱I will do as Flapjack says and ask the surgery’s pharmacist for some help.

Tried 150 x 2 for a couple of days but still AF so when it started again at 2am this morning took 100 plus 2.5!Nebivolol. Over by 4.15am.

[Outtheresinger]

So difficult to tell if the AF is caused by the Flec or is just the AF doing it’s own thing. I was on 200g of Flec for a couple of years but I kept feeling dizzy and wasn’t sure if it was the Flec or not so I decided to come off to see if my ablation really had worked. I weaned myself off slowly the dizziness disappeared and gradually my heart began behaving again. So I am really glad with my decision and I definitely feel more like my old self! Good luck

[Hylda2 in reply to Outtheresinger]

Thank you that’s good to know

[Singwell]

Good move to talk to pharmacist! As others have said - you're on the full dose and it ain't working - I'd be inclined to start cutting down gently. It's possible you'll do better on a lower dose with PiP as quite a few of us here. Hard to tell and annoying if there's no handholding!! Do you trust/get on with your arrhythmia nurse?

[Hylda2 in reply to Singwell]

Not this one. There are/were two of them and the other one was brilliant. Always try to avoid this one.

[belindalore]

How sad and frustrating isn't it that we can't rely on our Drs anymore. This has been happening long long before the pandemic. It's a big reason people come to this forum seeking help. I did. I'm in the USA and healthcare is not what it once was when I was younger. Drs stare at their computer screens instead of looking at us. But the insurance companies dictate over the Drs more and more. There are fewer going into medicine here and we have more and more foreign Drs. I know 3 people whose Drs are retiringbecause they don't want to deal with the insurance companies anymore. We the patients suffer from lack of good healthcare and no one seems to care.

I do hope you find a solution. It's frustrating. Take care.

[mjames1]

You are already on the highest dose of Flecainide. So since you cannot increase the dose, I see absolutely no point in continuing taking it if it's not working,

Jim

[Hylda2 in reply to mjames1]

I won’t. But! Do I take it as pip with Nabivolol as I did in the early hours of this morning. Do I slowly wean and if so how long on each dose or do I stop!!Hope to see pharmacist at surgery. Hopefully he will be around longer than the one at the local chemist

[mjames1]

Although it can't hurt to ask your pharmacist, I think this is really a doctor question more than a pharmacist question, because it involves not just a drug but a therapeutic approach.

As a few of us have stated, our doctors told us you can just stop taking flecainide. No weaning necessary. I believe your doctor told you the same thing. Did your doctor tell you that you can come off daily Nabivolol as well. If not, then ask.

As to taking it as a PIP moving forward, it really depends on how effective PIP will be and what your goals are. For example, if it doesn't keep you out of afib very long, don't really see the point. Also, I think you mentioned that you feel ok being in afib and have a low heart rate in afib, so you have to weigh the cost of going in and out of afib and being on flecanide versus just staying in afib and being off the drug.

The two downsides of permanent afib as I see it are quality of life and a lower chance of successful ablation in the future. So if your quality of life is better off the flecainide and you don't want an ablation in the future, permanent afib is something to consider with your doctor.

If you do decide to take flec as a PIP then I would follow your doctor's protocol which might include taking a beta blocker like Nabivolol a half hour or so before the flecainide.

Jim

[Hylda2 in reply to mjames1]

301 in the queue for EP I’m told

[mjames1 in reply to Hylda2]

Sorry about that. What about the nurse who told you that you can stop the flec? Can you get in touch with them regarding the Nabivolol and your PIP question?

The consensus here seems to be the flec isn't doing you any good so you should stop, but none of us are doctors or has your complete history.

The Nabivolol is another issue and they may (or may not) want you on it for reasons other than that you're taking Flecainide.

Jim

[Hylda2 in reply to mjames1]

Unfortunately the nurse seems unable to make decisions, my doctors always refer me back to the hospital so I’ll go it alone just as I do my thyroid meds

[mjames1 in reply to Hylda2]

Let us know how things work out.

Jim

[Hylda2 in reply to mjames1]

Will do. Thank you for all your advice. Di

[July30]

Hi I came off 300m of flecainide after about 10 years + I was passing out about once a month with very low heart rate low 40s rising up to around 120 .consultant to me off them in one back in July last year felt bit strange for about week .since then I was fitted with pacemaker in December and been fine since flecainide was great for first few years then it became the cause of my af definitely better without them all I take now is 5 m of bisoprolol after being on beta blockers for 33 years good luck.

[Hylda2 in reply to July30]

Brilliant. That is so encouraging