LONG TERM PATIENT WITH ATRIAL FIB..

[FLINGFLANG]

JUST JOINED AND I AM VERY NEW TO THIS, I AM 57 YEARS OLD AND HAVE BEEN DIANOSED WITH A/F FOR OEVR 10 PLUS YEARS, IVE BEEN THROUGH 3 ABLATIONS AND NOW HAVE BEEN PRETTY NORMAL WITH MY RYTHYM, BUT JUST PAST FEB 2017, I HAD TO HAVE A CARDIO VERSION AND SINCE THEN IVE BEEN PUT ON FLECANAIDE, AT FIRST IT WAS HORRIBLE BECAUSE THEY PUT ME ON 100MG TWICE A DAY AND I COULDNT WALK 30 OR 40 STEPS BEFORE I FELT I WAS GOING TO PASS OUT, THEN WE TRIED 50MG TWICE A DAY AND IT MADE A HUGE DIFFERENCE BUT IM WONDERING WHAT ARE THE LONG TERM AFFECTS OF BEING ON THIS FLECANAIDE, AWAITING ON A CARDIO STRESS TEST FOR DETERMINATION, WILL KEEP YOU POSTED..

[Spoiler]

I took 50 mg twice daily for 7 months, it totally controlled my persistent afib. I felt great, but when they did a stress test, I failed it in less than 5 minutes. They said I went into VTach caused by the drug. They refused to give it to me any longer😕. I thought I found my answer. I finally resolved to agreeing to ablation Jan 05. I think the drug is great if you can take it.

[Hidden]

Hello flingflang. I think 100mgs twice a day is the usual dose for flecainide and many people take that. If 50mgs x 2 works, so much the better. Some take 150mgs x 2 per day and a few 50mgs x 3. 300mgs per day is the maximum dose permitted. On the other hand some people don't take flecainide on a daily basis but have it in reserve in order to stop AF if it occurs. The dose that works best depends on individual requirements and it can be very effective. It's best taken on an empty stomach or an hour before food.

[Jong1945 in reply to Hidden]

I support everything Rellim2 says. As additional info, I have been on Flecainide now for over 20 years, both pre and post ablation. Side effects for me include a bit of constipation, but other than that it's not been bad at all. The doctors will check your "QT" interval response to the drug, and if it gets too long they will advise against continuing it (I suspect that's what happened that made Spoiler have to come off it). My QT is a little long but OK.

Prof Camm as St George's developed the "pill in the pocket" approach which is to stay off the drug as a regular medication, but pop 2 if you go into AF. I've only had one AF attack since my ablation (in the night after a large Xmas meal, so = vagal) but it converted with 2 x Flecainides (2 x 100 mg) and I didn't need to go to get an ECG

[cuore in reply to Jong1945]

Hi John Grover. In a previous post, you said you had an ablation in Bordeaux many years ago. Are you saying you had only one attack of AF since that ablation? Did the Bordeaux group prescribe Flecainide post ablation plus the "pill in the pocket" approach after a certain time?

The Bordeaux group prescribed Amiodarone after my first ablation July 3/'17 and likewise after my second one on Nov. 20/'17, for a period of two months. So, the total period of this drug will be six months.

[Jong1945 in reply to cuore]

Yes, correct. I was very nearly in permanent AF so was a somewhat difficult case plus some particularities in my heart. I have been on 100 mg Flec b.d. ever since. I could come off it but it damps the ectopics which I have always suffered. If I did come off it I could do PIP I suppose. I have only had one clear and definite AF attack - after a large Christmas meal with the combination of (i) come-down during the hoiday season after stress at work (ii) the meal (iii) early morning. Classic vagal symptoms. Strangely I think I was off Flec at the time, anyhow, it converted about 1 hour after popping 2 Flecs, so PIP effectively!

Have had other either possible-AF or bad ectopics / tachy episodes form time to time. But in all, they did the biz for me.

I also say that whilst they were in there I think they re-wired my heart to prefer only Bordeaux wines....

[cuore in reply to Jong1945]

Lol. I did ask Hocini if I could drink wine. She said yes, unless it was a trigger. So now I drink all wines, not just Bordeaux, very little and with a chaser of water.

Both my ablations were done in Bordeaux. Now I am in sinus, fingers crossed, I will remain.

[CDreamer]

I think it is very individual. There are both risks and benefits, as with any drug and one has to weigh up whether or not the benefits outweigh the risks for you personally.

There are risks taking this drug long term and it wise to have 6 monthly blood tests for both liver and kidney function, but you would probably have that anyway for anti-coagulation. And as has been mentioned, any rhythm drug can cause Arrythmia as well as stopping them but it is impossible to say how it will work for you, the first time I was given this drug I had to do it under medical supervision and on an ECG for 4 hours to ensure that I tolerate the drug safely. I believe at one time that was the norm but I don’t hear of that happening nowadays.

I took it as a PIP and then as daily dose 100 mg x 2 daily for some years. I can no longer take any drugs for AF as they exacerbate an underlying condition.

[dmac4646]

Here is a long term study

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