Flecanide X 3 times daily?: Hello all... - Atrial Fibrillati...

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Flecanide X 3 times daily?

RajaRua profile image
33 Replies

Hello all, I read on here not so long ago that someone was taking Flecanide 3 times a day instead of twice. My dose has been upped to 150mgs X twice a day but it makes sense to me to spread it out to have better cover. Can anyone advise re this?

Keep feeling like I might get AFib any minute in the early hours of the morning. I got a 2hr episode on Saturday morning and still recovering from that. Got it 6 weeks ago for 10hrs. It took me 3 weeks to recover from that.... I get a lot of symptoms with Afib..

No point in asking my GP as she doesn't know enough about Flecanide. I need to speak with my EP but not much chance of that at the present time. I just don't want to end up in hospital in this time of Covid. I'm doing my best to take good care of myself. I live alone and it's challenging but in some ways easier on my own.

Any advice or help would be much appreciated. Thank you for all your sharing and empathy on here.

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RajaRua profile image
RajaRua
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33 Replies
RajaRua profile image
RajaRua

Whoops I thought I was putting up a photo for my profile. This is the real Raja Rua. My darling Ginger Tabby. Raja Rua means My red prince! Raja= prince Rua = red .

Buffafly profile image
Buffafly in reply toRajaRua

Love the cat❣️

fra48 profile image
fra48

I take 100 x 2 but my EP told me once that he has patients taking 100x3 (hence every 8h)

What a handsome cat.....great company for you. I’m not medically trained so cannot really comment on prescribed medication. Whilst I can understand the logic, it is important not to exceed the maximum dose of 300mgs in any 24 hour period. Perhaps this is less likely to happen by accident if you only take it twice a day.........

CDreamer profile image
CDreamer

In answer to your question of taking 3 times daily - I’ve never heard of that unless you are instructed to take an extra dose by my EP, which has happened to me, because I was having AF episode ie: I had 400mg in one 24 hour period which stopped the AF episode but I was unable to take any further doses for further 24 hours period but that was under EP medical advice and GP supervision and some years ago now.

I cannot see the advantage myself - for instance what time gap? 24/3=8 hours. Could you stick rigidly to that regime? Would 100mg be enough to keep AF at bay at any one time when every person’s threshold of efficacy will be different? 100mg may work for some and not for others. Your dose will have been determined as the affective dose for you and the drug half life will be the deciding factor. Flecainide half life ie: the time it takes to exit your system is between 12-27 hours for those who have been taking the drug for some time and have normal liver and renal function.

I can therefore, see the reasoning in taking a higher dose with 12 hour gap which is about how the medication is metabolised and for how long it stays in your system. I would suggest you change nothing, certainly not without discussing with your doctor.

Love Raja Rua - does the name have a meaning?

Best wishes CD.

RajaRua profile image
RajaRua in reply toCDreamer

Thanks CD. I see what you mean re the the amount of Flecanide depending on how long it takes to exit the body.....it would be risky.

The last appointment I had was by telephone at the end of September. I didn't speak with my EP then though. I spoke with another doctor who went and spoke with the EP and called me back with this change . I have no idea what criteria he used . My blood tests seem to be fine of late. Never had problems with Kidney and Liver function....so far. I do feel different on more Flecanide.

I thought that if I took 100 X 3 times a day I'd have a better chance of being topped up with the drug and less chance of getting breakthrough AFIB. I worry that if I get a fib in the middle of the day having taken 150 at 9pm the night before and at 9am that day that I couldn't take anymore to help me get back to SR in middle of the day. I should've asked the doc this but forgot. I get very nervous when talking to doctors about these things. AFIB makes me so nervous as I get a lot of symptoms and take a long time to recover from a bout.

Thank you CD and the name means Red Prince. I am his humble servant and he gives me lots of cuddles and kisses in return. He's a very kind and sweet Prince. I rescued him in May. We rescued each other in fact! He's the first Ginger Tabby I've ever had and a total love bug.

jeanjeannie50 profile image
jeanjeannie50

How about calling the hospital switchboard where your EP is based and asking to speak to his secretary or one of the AF nurses there? Then they could ask him for you and give you his response.

Love little puss, such a sweet, calm and contented face.

Does anyone else follow Nala the cats journey on a bike with the man who found her as a kitten?

Jean

RajaRua profile image
RajaRua in reply tojeanjeannie50

I'll try that thanks Jean but not sure how far I'll get. I'm in the public system, not private, I've never heard of an AFib nurse at my hospital but no harm in asking. Thank you. Yes he's a darling cat. Didn't mean to put his photo up. I thought I was putting up a profile photo!

jeanjeannie50 profile image
jeanjeannie50 in reply toRajaRua

It gave me pleasure to see him. A beautiful photo.

jeanjeannie50 profile image
jeanjeannie50 in reply toRajaRua

If you're on Facebook this is the link to Dean finding the abandoned kitten:

facebook.com/soulmatesdodo/...

RajaRua profile image
RajaRua in reply tojeanjeannie50

I saw that on Youtube. what a gorgeous cat! A special fellow. I love Tabby cats!

RajaRua profile image
RajaRua in reply tojeanjeannie50

Must look up Nala the cat! Just read a beautiful book called Dewey about a cat in a library in Spencer in Iowa USA. I really enjoyed it. As much about the librarian who found him as a kitten in the drop box....as it is about Dewy the cat. He became world famous it seems. Very nicely written. It also describes Iowa and the town very well. It's not a new book. From 2015 or so.

RajaRua profile image
RajaRua in reply tojeanjeannie50

I looked up Nala Cat and it's a wonderful story!

jeanjeannie50 profile image
jeanjeannie50 in reply toRajaRua

I've followed them ever since. Dean has bought her every luxury item possible for her to sit at the front of the bike. I even have a photo of Nala on my windowsill!

chenstone18 profile image
chenstone18

I think that you can telephone your EP's secretary and ask for the EP to telephone you. My experience is that I had times of the day and night when I was most susceptible to AF and I made sure I took flec an hour before that and that was three times a day. In the end thought flec stopped working and gave me bad side effects. I prayer that you get to the route cause of your AF quickly if you can and find a better path in life with this condition.

RajaRua profile image
RajaRua in reply tochenstone18

Thank you Chenstone. I have a feeling you and others on here are in the UK and may have a different health system to here in Ireland. I'm not at all sure I can talk to the secretary like that or email my consultant either but I'm going to give it a go today. Thank you for the encouragement. what did you take when Flec stopped working may I ask?

chenstone18 profile image
chenstone18 in reply toRajaRua

I now do not take any meds as they do not work for me. I trust in the Lord and deal with an episode as and when it comes along. In my case dealing with stress and worry are the best things you can do for yourself and finding what the cause of the stress is and why you are reacting in that way. Stress, worry, anxiety, unforgiveness and anger can negatively impact upon the body thats why the best way forward o have found is to deal the route cause. Drugs just mask the condition and yes help you to deal with the symptoms but ultimately its best in my opinion to deal with the root cause. That will no doubt stir up some opinions on this site but its what I believe and it is what I am working towards in my life. Anyway hope that helps.

Singwell profile image
Singwell

Hello RajaRua! I sympathise with your predicament as my episodes happen in the afternoon, after lunch and I'd been wondering about taking 3 tablets a day as I'm on lowest dose. But CDreamer is right about the half life of the drug in your system. On the AFA drug advice leaflet it's cited as 14 hours for the half life. I'd absolutely recommend talking to your EP. Call the secretary and ask for an address - write to him/her and cc it to your GP asking for a telephone appointment or for written advice that your GP can act on. Explain your concerns especially at this time and living alone. If it's any comfort to you my episodes last 12-14 hours and I can feel very uncomfortable. However I have a kind and understanding husband at home with me so the burden is shared. Do be proactive as it will give you more control over your quality of life. I did a post back in April mid one of my episodes asking others what they did to distract themselves during an episode. It's a fun read and you might get some tips for managing when it happens next time.

RajaRua profile image
RajaRua

Thank you so much Singwell I think I remember that thread and yes it was fun and I'll look at it again. What does Half-life mean exactly? 14hrs half life?

Patient007 profile image
Patient007

I take 3 x 50mg a day and have been for the last 17 years. I take one every 8 hours.

RajaRua profile image
RajaRua in reply toPatient007

Thank you so much Patient007 (great name!). I got some good info today from all of you on here and I'll answer more fully later or tomorrow when I have more energy. It's been strange day.

Jfbould1 profile image
Jfbould1

I’ve been using the 3x daily regimen for a while now at both 150 and 175 mg daily. When at 175, I took 75 before bed as I found the extra bit eliminated the early morning episodes, which were my most frequent. I’ve dialed back to 50mg 3x daily and seems to be working.

RajaRua profile image
RajaRua in reply toJfbould1

Thank you so much Jfbould. I got some good info today from all of you on here and I'll answer more fully later or tomorrow when I have more energy. It's been strange day.

Jfbould1 profile image
Jfbould1 in reply toJfbould1

You’re very welcome. Interesting to see all the responses. We’re all different. You’ll find something that works for you, be confident of that. Good luck!

Guitar335 profile image
Guitar335

Hi RajaRua the post you are referring to may perhaps have been mine

healthunlocked.com/afassoci...

For me, I believe that this approach helps but as I stress in my original post I don't want to encourage anyone else to try anything from my own behaviour but do hope that it progressed the sharing of views and experiences....and of course all our bodies, circumstances and the way we live our lives are different. I hope you find the original post interesting.

FYI - For me, I too don't feel that my doctors understanding is not great, they chuck a dose at you and if you don't come back then they don't have the problem of seeing you anymore :-)

For me the logic was to even out and maintain a higher even dosage.

The down side to this approach is that its easier to forget one or miss a timing for sure.

Im sticking with it as my AF has greatly improved...may be coincidence...may be not

Good luck and best wishes

RajaRua profile image
RajaRua in reply toGuitar335

Thank you so much Guitar. I got some good info today from all of you on here and I'll answer more fully later or tomorrow when I have more energy. It's been strange day.

Flyer2820 profile image
Flyer2820

Hi RajaRua,

Before I had my ablation last year, I was on 100mg of flechanide 3 times a day. This was the only prescription that controlled my af. Doctors in the uk are not allowed to prescribe flecainide that is why they know less about it than the cardiologist. 300mg is the maximum dose you can have on flechanide so there is no where the hospital can go if you have a bad episode of af. I was hospitalized a number of times before they put me on the list for an ablation, so the best thing to do is get an ambulance whenever you are feeling very bad.

Af is hereditary, my Dad had it, I have had it and my younger brother is now suffering extremely severe with it now. It is only several trips to the hospital that has made them step up the procedure to a possible ablation.

Hope this helps.

Please feel free to ask any questions.

Good luck for the future.

Best regards,

Flyer.

RajaRua profile image
RajaRua in reply toFlyer2820

Thank you so much Flyer. I got some good info today from all of you on here and I'll answer more fully later or tomorrow when I have more energy. It's been strange day.

Bahrain22 profile image
Bahrain22

I'm on 150mg per day and my EP advised 3x per day, as it lasts for 8 hours. I'm finding this is working well.

RajaRua profile image
RajaRua in reply toBahrain22

Thank you so much Bahrain. I got some good info today from all of you on here and I'll answer more fully later or tomorrow when I have more energy. It's been strange day.

PamH75 profile image
PamH75

On med sites for Flecanide it says that "patients not adequately controlled by (or intolerant to) a dose given at 12 hour intervals may be dosed at 8 hour intervals." Another site states that "patients intolerant to BID dosing may require 8 hour dosing". I currently take 250 mg a day- 100 mg in AM and 150 mg at PM because I find Flecanide wipes me out but 100 twice a day isn't enough to control my AF- when I take 125 mg in the day I have a hard time functioning but 150mg at night doesn't matter since I head to bed. My cardiologist and I are considering me taking 100 3X a day since I continue to get breakthrough AF and can handle a dose of 100mg without big side effects. Each of us is different and we often need to figure out what works for us. I have been on Flecanide for 4 years and took 100 mg BID but recently I have been having more incidences of AF so need to figure something out.

Good luck RajaRua I hope you find the right dosing that works for you.

RajaRua profile image
RajaRua in reply toPamH75

Thank you Pam, Just had breakthrough AFib again at 4 30 AM but managed to get back into Rhythm at 9am by taking an extra 100mgs. I spoke with a Cardiology nurse yesterday and he reckons that you can take up to 400mgs a day of Flecanide! He's never heard of taking it 3 times a day. I'm in Ireland. He wanted me to take 200 at night and 150 in the morning. I'm tempted to try 100mgs X 3 times daily. I'm on this drug since 2013...7 years now I was started on 200mgs a day. 100mgs twice a day. After a few months I took it down gradually to 75 twice a day and then 50 twice a day. But as the years went by I had to increase it again. My EP knew I was doing this. Yes I know what you mean about the side effects. It feels toxic in my system for sure. I'm going to call this nurse again today and ask him to consult my EP. I've taken 300mgs yesterday and then 100mg this morning so I'm at 350mgs now. Never been in this situation before..... The nurse told me yesterday that my EP doesn't prescribe X 3 times daily for Flecanide. Must get back to bed and get some sleep. Thank you for your care and input everybody.

buddje profile image
buddje

I take 150 a.m. then 50 at lunchtime and 100 at night.........no episodes....cross fingers.Flec for 5 years now

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