Monitoring patients on Flecainide - Atrial Fibrillati...

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Monitoring patients on Flecainide

WendyWu20 profile image
37 Replies

Has anyone on this forum, who is taking Flecainide, received monitoring or testing?

Apparently, exercise can augment the toxic effects of Flecainide, whereby a prolonged QRS interval (caused by the Flecainide) may lead to potentially dangerous arrhythmias. So it is important to assess patients for underlying heart disease first, as Flecainide is not recommended in this instance. If started on this medication, patients may then be asked to undergo an exercise tolerance test while monitoring QRS intervals.

Some researchers found that,

'...routine exercise testing to detect QRS widening is not warranted in patients with no structural heart disease.'

sciencedirect.com/science/a...

However, some researchers recommend that,

'After initiation of flecainide, use-dependent QRS widening may be assessed during a formal exercise test. During treatment, the QRS interval should be regularly monitored'.

academic.oup.com/europace/a...

I had an echocardiogram showing no heart disease, but I guess I'd feel more reassured if I could have an exercise test just to check my QRS intervals!

Has anyone (with or without existing heart disease) been given monitoring while on Flecainide? Just curious....

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WendyWu20
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37 Replies
jennydog profile image
jennydog

Could this be the reason why GPs cannot prescribe flecainide?

I have had no tests and there is no way that I could do an exercise tolerance test.

WendyWu20 profile image
WendyWu20 in reply to jennydog

I only had an echocardiogram routinely, not as an assessment for my suitability for taking Flecainide. I saw a cardiologist in clinic only the once; he wrote to my GP asking him to prescribe Flecainide (without giving him any specific dosage instructions, so I've had a real palava getting enough extra tablets for PIP issued). The cardiologist then discharged me (as I have no 'plumbing' issues). I saw an EP last month, he never mentioned Flecainide dosage or monitoring.

I'm just curious as to what other people have experienced, as I've had to take a lot of extra PIP tablets lately, due to frequent AF episodes. I've noticed that my heart feels 'weird' in a different way to the normal (haha) AF experience, even when in NSR. So I'm wondering if it's related to the Flecainide... I'll see my GP if it persists.

jennydog profile image
jennydog in reply to WendyWu20

WendyWu20 your experience is exactly the same as mine. I had real difficulty getting enough tablets for use as a pip once daily use had ceased post ablation. My EP has recently written to my GP asking for it to be prescribed for me. I am building up a reserve in anticipation of future difficulty!!

TenorJK profile image
TenorJK

Had Flecainide as a Pip for 5years,then daily for9 Years 2 x 100gm daily not had an episode for 17months never heard of any of your worries so will carry on as usual! Jo.

WendyWu20 profile image
WendyWu20 in reply to TenorJK

Good to hear that it's working for you :o)

Finvola profile image
Finvola

I’ve taken Flecainide 2 x 100mg daily for 3.5 years with six monthly cardiologist visits and monitoring of my ECG. He told me at the last visit that my ECG was unchanged in that time, so he is obviously keeping a watch for anything untoward. The only exercise test was a stress test shortly after diagnosis 4 years ago.

Buffafly profile image
Buffafly

I was tested to bits before Propafenone prescribed, tested after then discharged. Next contact with cardiologist was before a big op many years later, then just an ECG.....

dedeottie profile image
dedeottie

When I first took flecanide I had to have an exercise stress test to check it wasnt causing prolongation of QS. All was well so then no testing . I then had an ablation which didnt fully work and so was left on a high dose without further testing. I then I had a 2nd ablation which was abandoned due to a potentially life threatening complication and suddenly as follow up I had every test known to man including stress tests during which tjey found that flecanide was indeed causing prolonged QS so I had my flecanide reduced and am having another test in a years time. Im not sure that I would have had these continuing tests if I hadnt been a "special case" and so the QS problem would not have been found. Scarey stuff isnt it? X

WendyWu20 profile image
WendyWu20 in reply to dedeottie

I'm not scared as such, I just like to take responsibility for my healthcare as far as I'm able. So this includes researching any medication I choose to take, and any additional medical support that's required.

So glad you got the care you needed! :o)

Dunstall47 profile image
Dunstall47 in reply to dedeottie

what is QS please

RoseSaba profile image
RoseSaba in reply to Dunstall47

I have been on Flacaine for 24 years, it has been reduced over the years. But now especially at night, I get a lot of fluttering and low pulse of 50. Very tired and extremely dizzy.

RiderontheStorm profile image
RiderontheStorm

The Flec PIP has been my magic chemical cardioversion in a bottle twice since the year post ablation.

Andyt36 profile image
Andyt36

What is QS

WendyWu20 profile image
WendyWu20 in reply to Andyt36

The heart muscle reacts to electrical impulses, telling it when to contract, and these can be measured when someone is hooked up to a heart monitor or ECG machine. When you look at the monitor screen or the ECG output paper, you'll see lines with sharp waves on it, each time the heart beats.

Q, R and S are the letters given to certain parts of the 'wave' which describe how the lower chambers (ventricles) of the heart are contracting and relaxing. The 'QRS interval' describes the amount of time it takes for electrical impulses to pass through the ventricles.

Dunstall47 profile image
Dunstall47 in reply to WendyWu20

Thank you.

greg35 profile image
greg35

My consultant just prescribed me with flecanide along with nebivolol never mentioned monitoring! now I am worried!

Regards

Ingrid

WendyWu20 profile image
WendyWu20 in reply to greg35

I'm sorry you feel worried Ingrid - it is not my intention to cause undue concern. As an ex-nurse, I believe we should all take responsibility for our health, as far as we are able. For myself, this includes finding out as much as I can about any medication I choose to take, and then having informed discussions with my healthcare providers.

Most people, by the time they are prescribed Flecainide, have been down the long route of having blood tests, ECGs and at least one routine echocardiogram. Possibly other tests as well. This will tell the docs if there is any structural heart disease present. If there is, they will not prescribe Flecainide.

Research suggests that Flecainide does not cause any problems when used by someone with a structurally healthy heart. My concern was that I had read a research paper advising that patients should be monitored, I guess as a 'safety net', just to be sure that the Flecainide was not causing any problems. As I've not had any monitoring (such as the exercise stress test), I wondered if other people had.

I've made an appointment to see my GP, maybe you could too (or your consultant), and we can put our minds to rest :o)

wilsond profile image
wilsond in reply to WendyWu20

Thank you for that,I see where youare coming from now!I wondered what the toxic effects might be ?

secondtry profile image
secondtry

Hi Wendy, thank you for raising this, very helpful.

My experience is very similar to Finvola. I actually get an ECG done every year in my GP surgery and send it to my private cardiologist. QRS has not been discussed, so will raise it in the Spring at my next cardio follow-up.

Sorry to hear you are having to use more PIP Flec , 4 years ago I wanted to use PIP Flec as I didn't like the thought of taking a regular daily dose of 2x100gms but my cardio said he didn't favour PIP, as I had had a few AF episodes, as the heart does not settle as well as on a regular daily dose. He started me on 2x 50mgs per day but was still getting AF episodes so tried 100mgs x2 and that has worked for 4 years, albeit as mentioned here many times I have also added lots of lifestyle changes incl diet & supplements.

WendyWu20 profile image
WendyWu20 in reply to secondtry

Well I feel a bit cross with myself, as I've got back into some unhealthy dietary habits over the past few months, put some weight back on - and hence more AF episodes. My own fault... but making a big effort again now :o)

Apparently, an increased QRS interval only tends to show up when the heart is under extra stress, such as when exercising - so that's why it's so useful to have patients on Flecainide doing an exercise stress test, on a treadmill for example. If there is a problem, it may not show up on an ordinary ECG where the patient is relaxing.

secondtry profile image
secondtry in reply to WendyWu20

Good to know, thanks Wendy. Just re your circumstances, if a bit of extra weight is pushing you over the AF edge, I would personally be looking at a variety of potential triggers as you appear to be too close even with some weight loss.

Hope that helps - should start using the acronym HTH!

terryw profile image
terryw

Hello Wendy. I have been on permanent Flecainide for over 11 years and to my knowledge have never had a QRS test. I have just re-read the AFA sheet on Flecainide which states that because of the risk of drug toxicity Flecianide users should have an ECG every 6 months. It also states that that this drug should be accompanied by a beta blocker or a rate limiting calcium antagoist e.g. Verapamil, to protect the ventricles. I should point out that my AFA Factsheet is quite old and so may not be up to date. I also like to know what I am dealing with which then puts me in a position to be proactive, and also to challenge some statements. I see a Cardiologist on Monday and I will be taking the Factsheet with me as I had already intended to discuss my length of time on Flecainide.Terry

WendyWu20 profile image
WendyWu20 in reply to terryw

Hi Terry, research suggests that QRS interval widening does not always show up when the heart is resting, hence the need for monitoring with exercise testing as well.

Thank you for reminding me about the beta blocker/calcium antagonist aspect. I was on a high dose of Verapamil for months, but decided to stop taking it after listening to Dr Sanjay Gupta, saying that it could make vagally mediated AF worse.

I think I also need to chat to a Dr again, about the possiblity of taking a lower dose of Verapamil rather than none at all! When I saw an EP last month, I told him I'd decided to stop taking the Verapamil, but he didn't say anything.

Onwards and upwards :o)

KMRobbo profile image
KMRobbo in reply to WendyWu20

I understood that you should not take verpamil with flecainide which I assume d was why I was moved from verapamil to diltiazem (aniothe r calcium channel blocker) when I had to start on flecainide.

WendyWu20 profile image
WendyWu20 in reply to KMRobbo

Hi, I haven't heard this. Did a doctor tell you this?

KMRobbo profile image
KMRobbo in reply to WendyWu20

I had a look and found bnf.nice.org.uk/interaction...

verapamil

online.epocrates.com/drugs/...

However I do not think these are what I looked at 6 months ago - I recall more detail in the site .

I was moved from Verapamil to Diltiazem at the same time by the consultant, which I assumed was for the interaction reason. .

Having said all that whilst looking for what I had read I have found other sites that appear to recommend Flec and Verapamil!

Confusing

terryw profile image
terryw in reply to WendyWu20

Hello Wendy.Thanks for the reply. I have had a couple of what I call 'exercise' tests' over the years.

I was on 5mg of Bisoprolol and because it was keeping my heart rate in the 50's and sometimes 40's when I was in SR I agreed with a GP that I could reduce the dose to 3.75mg. It had minimal impact on my pulse rate but I found that I could run a very short distance! Another GP suggested I stop it completely which I eventually did for 4 days until my lung capacity test ( another story but it 'screwed up' my heart until Christmas). I am again on the downward path (currently 2.5mg), and on Monday I intend having an in depth review on Flecainide with the Consultant (something I had already planned to do)! Terry

wilsond profile image
wilsond in reply to terryw

Flecanaide was given to me in Hospital A,after a prologend AF session,where they also took me off my betablocker at the same time,resulting ina blue light trip12 days later to Hospital B,was inresus for a while.Betablocker given back,calming down now and feel more confident with care.Series of followups already sent to me

Guess Im trying to say,care can vary

Patient007 profile image
Patient007

I have been on Flecainide for 15 years and I only have an ECG one a year

dmac4646 profile image
dmac4646

Hi, have been on Flec 2X50mg for 9 years only breakthroughs have really been chest infections otherwise fine - Stress Test at outset - ECGs every 2 years and recent echo - no issues.

stevie11 profile image
stevie11

Wendy have you had a stress test ever i am heading for my second one in 12 months soon that will find out any real damage as far as qrs complexes go..

An echocardiogram picked up my left ventricular hypertrophy..

WendyWu20 profile image
WendyWu20 in reply to stevie11

No, I've never had a stress test, hoping that if I speak to my GP he can arrange one :o)

KMRobbo profile image
KMRobbo

I have been on flecsinide since mid July 2017, 2 x 50mg. I was expecting a liver function test after 6 months but so far have Had only a standard ECG. The consultant told me they could see if there was a problem between me and the flecainide just by this.

I will look into this further.

Bagrat profile image
Bagrat

I've been on Flecainide regularly since 2011. My dose was reduced gradually at my instigation really and since Sep 2016 have been on 50 mg twice a day. I was discharged from cardio clinic in 2013. I ask for an ECG at GP practice once a year ( if I remember) which I haven't this year ( last one Sep 16) I had an echo cardiogram and exercise ECG (treadmill) when first diagnosed which showed low exercise tolerance. GP said that meant I was unfit and could do something about it.!! I'm even more unfit now and do wonder how the arteries are these days. Saw Dr Gupta in August as one off consultation and he didn't mention any investigations needed.

wilsond profile image
wilsond

Flecanaide brought on atrial flutter for me,but has weirdly done me a favour as Im now in the care of a very experienced EP and cardiologist.I had had an echo in the previous 18 montgs which showed good structure.Itwas prescribed in the first hospital I "visited" by their cardiology team.I have follow up outpatients appointments at hospita. I I thought GPs were not allowed to prescribe Flec?

I take 2x 100mg a day,and amwaiting for ablation. I think you would feel more feassired if you can get a cardiologist to check you out?

By the way,my 7 year old god daughter is on flecanaide for severe Supra Ventricular Tacycardia,and wil be until she is 12 or so,when ablation is possible.

WendyWu20 profile image
WendyWu20 in reply to wilsond

Oh, I hope your god daughter gets successful treatment, it must be worrying for her, being so young.

I was also wondering if the 'different from AF' heart feelings I'm getting, are due to the Flecainide converting the AF to an atrial flutter. I've made an appointment to see my GP as my next EP appointment is in 4 months time.

wilsond profile image
wilsond

It might well be,I saw a locum doctor at our surgery 11 days after being put on Flec WITHOUT ratexcontrol,said I felt strange and bp was high .185/120.Told to go home and relax.(!)

next day,son called 999,blue lighted as chest pa9n ,bp still high and heart 165pm.

I would check it out.Response is virtuallythe same as for AFib,medically speaking,it seems.

I see my EP ina few weeks,echogram booked 6thFeb.Double ablation planned.

Yes,poor little girl .....whata thing to have.Having great care ftom Birmingham Childrens Hospitalthough.

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