On Flecainide - what annual tests are advisable?

[secondtry]

I hope you all out there can help on this one.

Literally thousands of people must be on the powerful drug Flecainide, but it is not clear to me what the advisable annual tests are if you are being cautious?

My GP & cardio are silent on the matter, yet I have read here from time to time that an ECG, liver, kidney and others are prudent if you adopt a cautious approach. Your experience would be much appreciated as I now need to set this up with my GP surgery or, if unwilling there, to go private just to keep peace of mind. Thank you.

[BobD Volunteer]

Regardless of any drugs I am taking my practise does annual liver and kidney function tests Plus other bloods) at the same time as my annual 7 day BP chart. ie the month of my birthday.

[secondtry in reply to BobD]

Thanks Bob, I need to set this up as I think my practice also offers this and then sneak in the ECG.

[doodle68]

Hi ST 😊 my other medication Apixaban in particular warrants an annual blood test (it was 6 monthly but changed due to C19) which covers among other things liver and kidney function so if and when I eventually get a prescription of Flecainide, I am assuming anything untoward will be picked up in that test.

[secondtry in reply to doodle68]

Yes I would think so. Annual tests are valuable to spot trends but this is made more difficult by the habit of reporting some tests as over the acceptable level but this way you have no idea of whether the trend is downwards or upwards until an alert comes up.

[Hidden]

I am not medically trained but I understand that potassium levels should be checked before taking Flecainide so I assume they need to be regularly checked if it’s taken as a maintenance dose. As has been said, liver and kidney functions need to be checked at least annually if taking most DOAC’s.

[pottypete1 in reply to Hidden]

As you know I have been on Flecainide for decades.

Never had anything specific checked as far as I am aware.

If there has been any related problems it might be a bit late for me.

Pete

[secondtry in reply to pottypete1]

Interesting, from past oversights by the medical profession for me personally, knowing the way the wind is blowing re NHS cost cutting and the commodification of individual care I decided a while back I would have to get more involved in precautions - its great that you have not had any problems but I don't have the same level of trust!

[David1958 in reply to pottypete1]

How I ended up on Flecainide is a story unto itself. When I went to the Hospital with my first encounter with AF I ended up staying overnight. I reverted to sinus pattern by morning and they were trying to wean me off the intravenous feed. They mentioned something like a three med cocktail which worked just fine for the first hour. Then I crashed with my heart rate plummeting to around 28 bpm. I felt nauseous and hit the emergency button. As the team ran in they were trying to get an EKG using one of my ankles except my limbs were being pulled inexorably into the fetal position. I could hardly fight against it. A cardiologist finally arrived and reversed the process. I took a peak at the monitor and saw my heart rate at 28 bpm. A nurse saw me look and said that was not life sustaining. I am glad to say that I survived that episode and ended up on Flecainide and Metoprolol with no explanation what so ever. I eventually got off of both those drugs by my own doing because my doctors would not.

[secondtry in reply to David1958]

Wow David that sounds a tad scary. Can I ask how you weaned yourself off Flecainide i.e. cold turkey or very slowly reducing the dose?

[pottypete1 in reply to David1958]

Sobering story David

Hope all is well now.

Pete

[secondtry in reply to Hidden]

Thanks FJ will add Potassium to my request.

[Finvola]

My six-monthly blood tests are for Apixaban - liver, kidney etc. I have been taking 200mg Flecainide for over six years and have six-monthly ECG's and a chat with my cardiologist. He seems to check QT interval is stable and also depends on my verbal input but doesn't test anything else.

[secondtry in reply to Finvola]

Thanks Finvola good to know. You are lucky to be offered 6 monthly ECG's. I plan to have one every year, will probably have to go private.

[Reena09 in reply to Finvola]

Is there any reason why you have 6 monthly ECGs?

[Finvola in reply to Reena09]

As secondtry says, I am very lucky with my cardiologist who calls Flecainide 'advanced drug therapy' and has given me 6-month appointments for nearly 7 years. Last one was by phone because of COVID and he was content that I had a trace from my Kardia.

[Reena09 in reply to Finvola]

Thank you. Do you take flecainide on an empty stomach in the morning? I have seen contradictory advice and as I understand it is most important to have the 12 hour gap. I take it 30 mins post breakfast and 1-1.5 hours post dinner. Not sure if this should be changed.

[Finvola in reply to Reena09]

I take my morning dose on an empty stomach - by chance and evening 2 hours after dinner. It seems that absorption is faster (better?) without food in the stomach but my choice is to pick times when I am least likely to forget my dose and still have the 12 hour gep.

[secondtry in reply to Reena09]

I have always taken the morning dose when I wake up and then 5pm in the afternoon (3+ hrs after any food)

[tunybgur in reply to Reena09]

Every flecainide manufacturer has the same advice in the packet, 'take an hour before or after meals'.

I guess food compromises the absorption, I know tests showed yogurt etc stopped full absorption.

Good luck

[Bauldy]

I have regular tests have fatty liver/kidney and pancreas, had a scan all ok, there not worried so neither I’m i . I take a lot of different meds.

[secondtry in reply to Bauldy]

👍

[dedeottie]

I have annual tests. My consultant also did an exercise stress test every two years as it is at higher heart rates that he can see if the flecanide is causing any potential problems. At one of these It was found to be causing concern with the QT interval so I was taken off flecanide and put on sotolol which has been a good drug for me despite its bad press. X

[secondtry in reply to dedeottie]

Thats good to know, thank you.

[Doggiemomma]

In additional to my annual blood work, there is a specific Flecainide serum test and the normal range from the lab here is between 0.20 and 0.99 mcg/ml. It's good to get a baseline.

[secondtry in reply to Doggiemomma]

That's interesting, never heard of that test before. Can I ask are you able to point to how this has helped given that we are all different and therefore will no doubt be right across the range?

[Doggiemomma in reply to secondtry]

(Answered by Palpman below--thanks!) Adding this info: the test it given 11 hours after your last dose, (or an hour before your next dose).

[secondtry in reply to Doggiemomma]

Thanks Doggie for adding this, the details are so important.

[Bawdy]

I didn't last more than 2 months on this drug due to hallucinations so for me it must be a very potent drug to be wary of. Good luck.

[secondtry in reply to Bawdy]

Hope you are much better now, some people are badly affected thankfully I don't think it is that many judging by the various posts here. I think the older and with more heart/other comorbidities the more the risk.

[Bawdy in reply to secondtry]

Went off it immediately and that was it, no more spiders jumping on me, thankfully I'm not scared of spiders but in the middle of the night, not good. Cheers.

[tunybgur in reply to Bawdy]

I would keep quiet about that otherwise it could be touted around hippie circles

[Palpman]

The most important test is the Flecainide plasma level in the blood.

Over time Flecainide can start accumulating at the higher dose or the liver function decreases.

This accumulation can prolong QT and further hinder liver function.

Long term users and the elderly should have regular blood tests and ECG to monitor this problem.

Flecainide normally does not prolong QT to cause LQTS by itself but it would push it further if you have genetic prolonged QT or you take other QT prolonging drugs with it.

Never take anxiety or antidepressants such as Sertraline with Flecainide. Most drugs types with the prefix "anti" are culprits.

[secondtry in reply to Palpman]

Really appreciate you sharing this information Palpman, just the detail I was hoping to receive. Can you spare me a moment to advise where you got this information so I can build a case to have those tests on the NHS.

[Palpman in reply to secondtry]

Mostly from CredibleMeds as they concentrate on LQTS and Torsades de Pointes.

Many other credible websites also have this info such as Mayo Clinic.

Since you answered I have edited my above post to add more info.

[secondtry in reply to Palpman]

👍👍👍