I've just started 4 days ago on 50mg x 2 per day after finding that PIP didn't really work for me. First 4 days were very good with 0 episodes, but then last night in bed I overheated and had an episode. This terminated within an hour after I got up and sipped water etc. but now this morning I have another one (sigh/sob).
Can I hope that this might terminate more quickly than usual due to the Flecainide in my body or should I reach for the PIP again as well? (Generally I have been averaging 1 or occasionally 2 episodes per week of 4-8 hours duration before starting the daily dosing.)
Many thanks.
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BigArnie
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I was also on 2 x 50mg pd and although my tachycardia episodes decreased I still had a few. The dose was upped to 2 x 100mg pd and so far it's been good except for ectopics.
I was told that should an event occur then I can take I more Flecainide but no more due to my age. 300mg ps is max for me although it can be pushed to 350 for younger people.
Thanks Palpman. I am only 4 days in so hoping the 50mg will be enough, but will surely go to 100mg if necessary and if I can tolerate it. I am tired of the daily struggle of PIP only and the knowledge that an episode will always, always catch me out at some stage.
If your doctor has said it’s ok to take a PIP dose on top of your daily dose (which is lowest dose as I was taking 150mgx2 daily) then the only way to know is to try.
Just take care you don’t exceed 300 Mg in one 24 hour period & always take on an empty stomach.
So actually the doctor said only to add 50mg if needed as PIP, although I think he is just trying to keep the dosage as low as possible. This morning I decided to take an extra 50mg and it terminated an episode within an hour. Given the wide ranging advice being given by different cardiologist to different people on this forum then I suspect I would be very safe with another 50mg an hour later if the first attempt didn’t work.
I struggled with trying to control Afib for over a year with PIP, better exercise and nutrition and in the final analysis it didn’t work. I rather regret the whole PIP concept because it has just left my heart in a worse state than it was a year ago, due to the 50+ episodes that I’ve had...
Thank you so much for posting this question. Your situation seems similar to what’s going on for me, although I started 3 months ago on 50 mg times X 2 pd. I’ve been hesitant to up the dosage to 100 mg X 2, trying to keep dosage low. I’ve had three episodes in the past three months, the most recent one last night, just hours after talking to my EP. He said it was really up to my comfort level whether I continue to ride out the occasional episode or up the dosage to 100 mg X 2, and said that having monthly-ish Episodes of 3 to 4 hours that resolve without cardioversion etc. would not be an extra wear on my heart. Albeit no fun! I am hesitant to put a heavier daily dosage in my body, but hate having episodes, even when they resolve in little more than an hour, as one did last night after taking a metoprolol and an additional 50mg Flecainide. Do I understand you to be saying that for now, you are staying on 50 mg X 2 and then taking an additional 50 as PIP? Or have you moved to 100 mg X 2? Any insights or experience of yours are appreciated, as the days go on. And good luck with your experimentation. It seems we are all mad scientists with our own bodies on this journey...
Thank you. As I've only just started on the daily dosage then I shall keep it as is for now and yes, the extra 50mg was a PIP 'authorised' by my cardiologist. I also had a cardiologist say that 4-5 episodes a month was a 'manageable' amount, which is why I persisted without daily medication for so long. Frankly COVID probably caused me to wait an extra few months beyond my comfort zone - that and a few green shoots of hope which this annoying condition throws to you every now and again. Happy to share as things develop.
I can't really add much more to the other comments. I will say one thing though - 4 day's is not very long. I think it can take sometime for flec to 'get into your system'.
You may find after a month or so your cardio suggests upping your dose to 100mg twice a day. Personally that's what happened with me and it's worked very well. I can also take one more as a PIP (should I go into afib - max 300mg in 24 hours) and it works wonders.
As your body adjusts to 50mg (and it appears to work for you as a PIP even at that low dose) then wait and see what your cardio suggests.
If your doctor has given the go ahead to use it as a PIP too, personally, I would take one as soon as afib kicks in.
I hope it works for you - allow sometime though before you really start to see results.
Paul
Edit. I wrote
"if your doctor has given the go ahead to use it as a PIP too, personally, I would take one as soon as afib kicks in"
This works best on an empty stomach and won't be as effective if you have just had a big meal.
Thanks Paul, yes I gather the half life can be anything between 12-24 hours (plus) depending on the individual, so I shall definitely give it go for a few weeks. I think you're right about taking the PIP straight away. The whole point of me going onto the daily dosage was to avoid time in Afib; I'd hoped it would stop it altogether, but logically accept that may take a while or require a higher dosage, or indeed never happen. However, minimising the minutes in Afib has got to make sense.
Yes, good advice that I should heed. The cardiologist seemed to put me at the lower end of risk from his comments - normal heart structure, low stroke risk etc (hence starting with PIP), so I suspect his suggestion of 50mg PIP is low for that reason rather than because he believes me to be susceptible. But you are absolutely right, I should ask before going beyond his recommendation!
I would push your cardiologist to authorise a daily dose of 200mgs without delay. I was similar to yourself 6 years ago did that and had no significant AF since.
Thanks secondtry. He said we should review after 3-4 weeks, although he did indicate that this might just be a chance to get 'a rest from episodes', but frankly I am not going back to 1-2 episodes every week if there is some chance of none. If the 50mg x 2 is working after 4 weeks then great. If it isn't then 100mg x 2 it shall be!
(I have to also share that the sheer relief of stopping the PIP battle and going into a new phase where there just might, possibly, be zero episodes, was such a joy! OK, 2 episodes on day 4 have tempered that a bit, but I am still hopeful that might just be because the Flec had not built up sufficiently in my body, but we shall see.)
Great positive outlook! 2 episodes a week in 2014 meant I was offered an ablation but I requested more Flecainide as PIP, fortunately my cardiologist persuaded me that PIP would 'be too much of a rollercoaster for the heart'. I followed his advice and so far it has worked in my case. Good luck!
PiP; pill in pocket! So you carry the pill around and take it as and when you need it, not on a regular basis. Don't worry, in the early days I had to search for the meaning of abbreviations. You may find this useful
My first afib happened when I was 29 with hospitalization, could not find anything wrong and was put on verapamil for a long time. Then again in my early 40’s another episode with hospitalization same thing, by my 50’s many episodes now 57. This runs in my family and they all live well in their late 80’s and some 100’s. I was using Flecainide 200 mg total PIP about 4 years ago but tired of the yoyo afib episodes they were shorter 3-6 hours than the 12 hours without. Mainly after dinner and increased if I had gone to the gym earlier that day. Went on 2X50 including metoprolol 1X100mg no good same episodes just shorter had to take pip 100mg to stop afib. At 2X100 Flecainide and 1X100mg metoprolol very few afib maybe once a month for 1hr or so, but always had the funny feeling of it coming on or ectopic heartbeats. Finally moved on the max 2X150 Flecainide and 1X150 metoprolol, the upping of metoprolol was to keep the diastolic blood pressure lower as the higher flecainide was increasing that number to 95-98. Current blood pressure resting 114/71 with a heart rate of 62 and very calm heartbeat. Have been like this for the past few years and have not had an afib or ectopic during this time frame. The most difficult part is getting in some good exercise, probably because of the metoprolol as I cannot get heart-rate above 120 max, which also causes shortness of breath during exercise . In the past I could push to 165.
Hi Manny, glad you seen to have it under control! I also love my running - only 12 - 15 miles per week - and just a couple of years older than yourself. I wonder if I pushed myself a bit hard in trying to get my 5k time down in 2017 -18 and paying for it now, although actually Afib first reared its ugly head when I couldn't run for 5 months due to plantar fasciitis in 2019.
Like other muscles the Heart gets stronger and more stiff I believe from working hard with cardio cycling caused more afib later in the night than just lifting weights. Now with meds and no gym to go to have not been able to go to spin which was my favorite. Was told by my primary doctor walk more do not push the heart to its limits, you don't need to, work on flexibility also.
I have just read your post. Please just be very careful with your flec doseage. It caused me to have a serious VT rhythm which could have been fatal. It is different for everyone and your cardiologist is obviously the professional but Ectopic1 was correct in saying it can cause other arrhythmias so just keep an eye on it. I wish you well x
Thank you Diamondcat. I’m glad that you were able to ride it out and I shall surely be careful. I do keep a close eye on my Apple Watch ECG graphs for anything that looks different to my normal and have shared with the cardiologist in the past, as well as having echo and MRI scans, albeit over a year ago and prior to starting the daily Flec regime recently. I do think I am starting to get some minor side effects as the drug builds up in my body, but it’s only been 6 days.
I was on 50mg 2x and had a break through. It was after a long flight and a couple of beers which I no longer drink. It went away in minutes with a 50mg PIP. So I got my Doc to up my dose to 75mg 2x. That was several years ago with no recurrences. I carry a 150mg as a PIP. If I had a breakthrough I would take 75mg and give it an hour then the next 75mg. 300mg/24hrs max.
Many thanks. Although it’s early days, I have been a bit disappointed to have 3 episodes, but equally heartened that one terminated on its own in less than an hour and the other two in around half an hour with the extra 50mg PIP, which I shall now do religiously ASAP. Hopefully as the Flec builds up in my body the episodes will cease/reduce in frequency.
Also my cardiologist has not prescribed Bisoprolol, which I can only assume is due to my presentation. In particular my resting HR is fairly low due to running, which I believe may be a factor(?)
My HR and BP are also low due to year round cardio so I can mogul ski in the Sierras at +8k ft. elev and do descent climbs on my mountain bike. The Bis was making my HR drop into the 40s.
My doc said I needed it to prevent potential dangerous tachycardia which is a side effect of Flec. He was adamant if I wanted to stay on Flec. I needed to take the Bis. I am only at 1.25mg / day but I hate it. I also carry Bis as a PIP which I plan to take before I take Flec as a PIP. I couldn't find a lot of literature on needing a HR reducer to take in conjunction with Flec just these FDA "Black Box" warnings
I try to stay ahead of this. It has been years since my last AFib but AFib is progressive and every AFib events makes it easier to have the next so I avoid triggers like drinking and always have a PIP.
I started out at having the second Afib 1 year after the 1st. The next was 6 mos, then 3 mos, then 1month. I went on Flec 50 2x and had a break after a red eye from California to GB and a few drinks. So It was upped to 75mg 2x. My BMI was 25 and my doc said I was too fat so I dropped it to 22 and quit drinking.
He now says I may never have another AFib. As I said it's been years, 3 or 4. I'll be on meds for life as fib strokes are often very severe.
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