Morning everyone. I have posted here recently concerning flecainide and received some very helpful information. Since being recommended this drug for my ectopic beats (which I have tried to 'live with') by an EP, my consultant has since suggested I try it as a pill in the pocket.
The recommended dosage is 50mg one a day. This does seem a low dose compared to others.
What I'd like to know is:
Does anyone use this as a PIP and how it works for them - effective and actually works!?
Does this seem like a low dose and therefore may give fewer side effects?
If only used as a PIP does this mean that the recommended ecg on uptake and 5 days later is not necessary?
Hope the above isn't confusing. I feel I've wasted enough of my life being affected by this horrible sensation etc., and would love to hear from others with similar experiences. BTW they believe my problem is down to congenital heart defects and possibly scarring from OHS.
Thank you.
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DebbiB28
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hi Debi I have had Eptopic on and off for nearly 50 years managed to control them until 10 years ago them I a put on propan and sertraline for the anxiety it causes this seemed to work until I had my 3rd Covid jab, then back came the regular eptopics visited my cardiologist who recommended 2 x Flecanide which helped he suggested upping dose to 2 x 100g and this has virtually removed eptopics but you still get the sensation and feelings in your chest but no extra beats my side effects seemed to be occasional dizzily and vision focuss plus body feels like it’s buzzing, I tried to reduce dose to stop this but back came the dreaded Eptopics a pip for me wouldn’t be enough next option if I want to come off tablets is an ablation ? Good news now I can have a few drinks with little or no Eptopics hope this helps andy
Thank you for responding. My ectopics also seemed to be 'upset' by the vaccinations and am nervous about the upcoming booster. However, I think for me it's time to certainly give the flec a chance. The last week has been awful following a relatively tolerable 3/4 months. I just don't seem to be able to 'live with them' as others can. I haven't had a 'drink' since last Christmas for fear of aggravating them but it seems that approach hasn't helped and do miss the odd glass! Thanks again.
HI Debbi, I'm sorry to read of your ectopic problems. Unfortunately I can't be of any help with the flecainide use topic, but wanted to suggest looking into what helped me with my ectopics. Thru my own searching, and no help from my doctors, I found magnesium supplements, specifically magnesium glycinate, to stem my skips for nearly 6 months now. Some very informative videos available on YouTube by Dr Sanjay Gupta on magnesium helped convince me to give it a try. Sorry I'm not handy enough to post the link. Good luck, I hope you find something that works for you. Ryan
Good morning. Thanks for helping I have just recently started on magnesium citrate and I also watch D r. Sanjay Gupta who is very helpful. I've even considered paying for a consultation with him!! I''m hoping the magnesium will help - any help is fantastic!! Best wishes.
hi Debbi…I was having 26,000 PVCs/day but wasn’t really having noticeable palpitations…just dizzy and easily fatigued…They tried most of the beta blockers, ace inhibitors and other drugs and nothing worked.. I also tried all of the magnesium and meditation type remedies and no effect…finally my MAYO clinic EP suggested 50 mg x2 dose of flecainide…Within a week, PVCs down to 14/day…an amazing result! 4 years later, still controlled…yes, I do have some occasional light-headed sensations, but nothing like PVCs..I also have an occasional drink…and although I don’t like taking drugs, these have been pretty tolerable..I was told I could try going off the regular dose and use the PIP if I had problems, but haven’t done it yet…how many events are you having? Symptoms? If anxiety and symptoms are issues, it might be worth a trial..
Morning. Thank for your help, I'm currently on a low dose bisoprolol which I'm not convinced is doing anything - can't take higher dose as it lowers my bp too much. I've also recently started on magnesium . However it seems my heart does what it wants and although ectopics are daily, some days are more manageable than others and I also get 'phases' where they are more intense and regular and last like this for a week or two. My 'burden of ectopics is considered low ,but for me my quality of life is dramatically affected, hence the suggestion of flecainide. Thank you.
I’m in a similar situation. Bisoprolol 2.5mg not really doing anything and can’t increase because BP too low. My situation has become more complicated by developing AFib so I’ll see what the consultant advises when I eventually get to see one. I know some AFib people take Flecanide as PIP for AF episodes, but I’m having thousands of ectopics per day which does impact of QOL. Magnesium failed to make much difference and neither do breathing exercises do that much. It was such a disappointment to find that Bisoprolol didn’t do much.
Thank you for your input. I have today seen my GP face to face to discuss the recommendation - he will be the one prescribing - and we've agreed to try the PIP approach, For me it is a stepping stone to possibly taking daily. We will see how it goes. As I got very emotional during the appointment I also realised just how much this is all getting me down. I pick up the prescription tomorrow - no doubt the ectopics will calm themselves down by then lol. Sods law! Have you ever been considered for flecainide? I hope you find something that helps you!
The “ectopic burden” is as much a mental burden as anything else. I’ve “only” had a few episodes of AFib although I know that it typically progresses, but the most recent one was four months after the time before. The ectopics however are every day and most of the time, and although described as “benign” and seen as trivial, they impact on quality of life quite considerably. My GP has written to cardiology for advice. She suggested going to 5mg Bisoprolol but as my BP was 80/56 last time she then said probably not a good idea in that case and that she’d ask cardiology. She also said she’d try and get my appointment brought forward, but with the backlog on top of an already high demand service, I don’t think there’s much leeway in the cardiology department to see people quicker. I think Flecanide may be a next step as a lot of Afibbers have it as a PIP but some AF people don’t have much of a problem ectopics, whereas my ectopics can be so constant and sometimes I can’t tell when I’m in AF or just having bad ectopics. Let us know how you get on with the Flecanide
You're right about the mental burden - I'm not sure what's worse - the ectopics or the effects they have on general well being. I had an episode of AF Christmas before last which landed me in hospital on Christmas Eve and didn't escape for 5 days! My ectopics are daily but then I have times like this past week where they are intense, can make me feel dizzy and can be very uncomfortable. It's really hard to accept they are 'benign' and truly hate that I have them! I will let you know how I get on with the flecainide. I hope you make some progress on your journey and find a solution. Best wishes.
Afternoon. I've taken Flecanide 3 times now as a 'pill in pocket'. The first one (50mg) I cut in half in case I had any horrible symptoms (I'm a chicken!) and on the other two occasions took the correct dose. On both of these occasions I did notice some improvement in the ectopics which frankly are ruining my quality of life. On that basis I am leaning towards going back to GP with a view to taking the tablet daily. I already have the medication but have been directed by the EP at my hospital to have an ecg when I start and then again 5 days later. I was so relieved when I noticed the ectopics had improved and feel this might well be the right route for me. They have been particularly bad since a recent vaccination but of course this could be coincidence. Either way I hope to find some relief!! If you like I can update further. BTW dosage suggested is low to what I can gauge on here - 50mg once a day. Therefore I assume it could be increased if necessary.
Thanks for your update. I now have an appointment at the arrhythmia clinic in December so I’ll discuss possible medication at that appointment. In the past, an ECG reading is taken just before any appointment at cardiology. I think I might have read that an echo might be required before taking Flecanide but I might have that wrong. My last echo was August 2021 but whether that’s recent enough I’ll find out. My situation has changed since I was last seen at cardiology in that I’ve been able to capture a reading of AF on the Kardia whereas it didn’t happen on the 24h ECG that was ordered after it first happened. I can’t increase the beta blocker due to low BP and as I previously mentioned, it doesn’t do much for the ectopics. I think you need a satisfactory echo and/or ECG before you can have Flecanide. I’m not sure Bisoprolol is the correct PIP for paroxysmal AF but I’ve had no advice whatsoever so far and I’ve waited so long for this appointment.
I’ve found that viral illnesses can affect ectopics and if you’ve had a vaccine it’s the same immunity response going on. I have so many ectopics I honestly couldn’t tell the difference after my vaccine over 2 weeks ago. In fact, over the following few days I had a few better days with the ectopics but that’s just the typical ebb and flow. Nothing changed for better or worse. I’m having the flu shot next week. I postponed it because I woke up on the day of my appointment with a sore throat and didn’t know if it was going to develop into anything more. Fortunately it didn’t but I didn’t want to overload my system if I was already fighting off a virus. I won’t have the flu shot on the same day as the Covid one because I mount quite a response to the Covid vaccine with full on flu-like symptoms for 24h. When I had an antibody test after last year’s Covid booster my antibody level was very high so I know it’s just my immune system getting to work. Same again this year. But still …. I don’t want to overdo it! Like you, I’m a bit cautious when it comes to anything, meds or whatever.
Hoping the Flecanide works for you. Please post again after you’ve been on it for a couple weeks. It will be interesting to see if it makes a big difference.
Morning. Research I've done says that the heart should be 'structurally sound' before taking Flecainide. I believe the ecg's are to ensure that no rhythm changes have occured due to the tablets - worsening. My ectopics are worse at the moment, but this happens - they seem to go in batches! I'm also due to have the flu jab but am reluctant with the way they are currently. Also today I was due to have a CT scan but have been up with a sickness bug so have had to rearrange for December! I'm doomed!
I've booked my ecg's for 9th and 14th November so will be taking Flecainide daily from then. Fingers crossed! Will update and you do the same! It's nice to share.😋
Good luck with your upcoming tests, I hope all will be well.
I had last year’s flu jab for the first time and had zero side effects, but there’s no way of knowing how anyone will react to anything, as it’s so different between individuals and from one year to another, or so some people who have had the flu vaccine have told me. I’ve only ever had one.
Is it a cardiac CT scan? I’ve only had one CT for the colon and it only seemed to take a few minutes.
Planning to book flu jab for this week or week after if they're in stock! Fingers crossed no side effects. I'm booked for a 'CT gated complex congenital with contrast'!! I've had an MRI before and needed diazepam so these 'doughnut' ones for me are much more tolerable. I believe this is as a result of some 'ST Changes' on a stress test - no idea what this means. Anyone?
Probably the BHF forum would be a better place to ask about ST changes. When I look up ECG info online I am confused by the complexity of all the possible changes on different leads. At least you are getting these tests done, scary as they are. I’m getting braver about learning more as it applies to me, and what the longer term implications are for treatment etc. It’s incredibly draining, the emotional side of coming to terms with any cardiac condition, and these long waiting times, delays, cancelled appointments etc don’t help.
My limited experience with the CT was not so bad. I had an MRI in January and it was a very up-to-date scanner but instead of the tube like tunnel it was more like a pod, it was sort of curved and tilted inside and I couldn’t see the tiniest glimpse of anything outside the machine. It wasn’t as noisy as the older ones, which was some consolation but I persevered. I knew I had to go through with it otherwise that would be one precious appointment gone to waste and I didn’t want another 6 month wait.
Good luck with flu jab. I’m hoping to get mine this week. I’m 4 weeks past the Moderna booster now. Glad to have had it, despite my “flu” reaction to it!
Flu jab done - no adverse effects just a dead arm! I've had first of 2 ecgs to monitor any changes with flecainide - second one tomorrow. I'll post regarding how it is and how flecainide is going - 7 days so far!
It’s good that they’re being thorough with the checks. Are you finding that your ectopics are reduced on the Flecanide? I had a 15min episode of AF at 3am at the weekend and then another episode of about 1 hour – 1 hour 15 minutes at 10am the following morning, so I’m wondering if I’ll be offered it when I eventually have my arrhythmia appointment. But I’ll just have to wait.
I had my flu jab last week, no after effects at all.
Good luck with the second scan, I hope it’s working out for you.
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