I’ve had Lone PAF for about 6 years, episodes lasting between 5 and 20 hours, every 6 weeks or so, always self correcting. In the last month the frequently of episodes has increased dramatically to every 2 or 3 days, each lasting around 18 hours. I am no meds at all with a chadvasc score of zero. I have just turned 60. I think I should start anticoagulants… thoughts please…thanks
anticoagulant : I’ve had Lone PAF for... - Atrial Fibrillati...
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Lewis1234
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BobDVolunteer
Quite a few people think that any AF needs anticoagulation so you will get no argument from me. Best speak to your doctor about your options I think.
Best to speak to your GP or if you are under the care of a cardiologist or Electrophysiologist then ask them.
Have you not ever had this conversation with your Cardiologist or EP over the years, especially more recently. What is your family history of AF, strokes or other cardiac issues ? ... that may well be a turning point in anyones thinking.
Hi. I find the GPs don’t know. I had a chat with Stephen Hunter in Sheffield last week, mainly about going for his version of the mini maze procedure, decided would try an ablation first. He said they are going to be changing the guidelines sometime soon regarding AF and anti coagulation… the implication being more people going onto anticoagulants
Can I ask, did you have a private consultancy and would he then be prepared to consider doing the mini-maze on NHS?
Yes that’s correct… a cool £400 though…
Thanks Lewis. Better than coughing up £30,000 or what ever it would cost going private. Mummyluv would know the exact figure. How long is his list do you think for NHS patients?
He said it 'wasn't very long'
Thanks Lewis.Do you now have to get your doctor to refer you to him, or does he just put you straight onto his list?
No referral. Spoke to his NHS secretary on phone then she spoke to him and he the set up the teams call.
What is his contact number to arrange a consultation please?
Hi, Not sure why? but I don't want to give out numbers on here, but it is easy to find if you google Steven Hunter sheffield, hope it goes well
Thankyou
I hated the idea of taking anticoagulants- until I had TIA after 12 months free of AF following ablation. I then couldn’t get back on A/Cs quick enough so I think it’s a personal choice. Speak to your GP as some are not as informed as others.
CHADS is purely an algorithm which informs decision making but there are no absolutes.
I'm in a similar position except no increase in episodes and on Metoprolol and Flecainide. Last episode 4 months ago and counting. Before then, probably 6 - 10 episodes a year but better at managing triggers now.
I discussed AC with cardiologist when I was first diagnosed 5 years ago. I presumed I would be starting AC. Cardiologist said no, the risk of brain bleed etc was higher than risk of stroke in my case. I subsequently found out about CHA2DS2-VASc and understand better why that's the case - given I'm also a zero score. I'm still a few years away from 65, when my score will increase to 1 and around that time I'll seriously consider AC. That's unless circumstances change, which includes the possible use of AC as a PIP in response to episodes (currently being trialled in USA)
I presume you don't want to be medicated for AF or can't be. Some prefer to go for ablation early but my quality of life is good on medication so not keen to go through ablation until/unless I need to.
The anti- coagulant as a PIP sounds interesting, but I would imagine it would have limited use. Some of us (I am one) are asymptomatic, so would really be better off with a daily dose, unless they come up with some fool proof device that you wear permanently and which bleeps or something when you need a pill!
Yes, asymptomatic episodes and episodes while sleeping would be major issues for PIP but they are being addressed with technology (Apple Watches and a modified algorithm to detect episodes). It might be a few years before we hear the results but it sounds promising.
Hi, AC as a pip sounds really interesting, I assume they work very quickly? As an EP I spoke to recently said they took patients off AC one day before ablation. I’ve never really worked out my triggers except definitely dehydration combined with tiredness and eating late, although there is no consistency with these… I assume my increase in episodes is a natural progression of AF but it has been very sudden… I have never been offered any medication apart from Bisoporol which slowed my heart too much, but I use as pop now, and Flec as a pip which I basically OD’d on and went into a horrendous tachycardia and collapsed then blue lighted to hospital, thought I was dying and then self corrected at hospital doors! Bonkers…
I was taken off anticoagulants for 2 days before an ablation a few years ago and when they did a transeosophogial (TOE) before the procedure, they found a small blood clot so had to abandon that attempt. I was sent home to rest for a few weeks and had the ablation a couple of months later. I’m 59 now and even though I haven’t had any known AF for 6 years now, my doctor wants me to stay on ACs for life.
The thing about AC as a pip is that you have to take them for a month per episode as I understand it. In your case with the frequency you are experiencing in effect you would never come off . I was very reluctant to take ACs , I have only had two episodes so far , two and a half years apart , and sixteen months and counting . Both when I have landed in A&E , and been seen by my cardiologist they were very insistent I should take an ac . I take Edoxaban no side effects so far. I score one for age, and one for female . I guess they see the people with strokes coming in . It’s hard to predict how AF will affect us. My friends husband aged 50 blacked out in the car and hit a tree due to a stroke and that’s how he found out he had AF. My hairdressers wife in late 40s has very frequent AF , no AC and is fine. I would definitely have a conversation with cardiologist . Wouldn’t bother with GP
My brother had a stroke, lost his left periferal vision and drive into 2 stationary cars! He then found out he had AF. I am told I was lucky it was detected before a stroke. I am on apixaban and told I will be on it for life. Had an Ablation 3 weeks ago.
What is a pop?
I think they mean PIP (pill in pocket)
Using Bisoprolol as pop/pip. What dose were/do you use?
They originally wanted me on 5mg daily but my heart rate went into the 40’s so I gradually reduced then came off altogether 3 years ago as I saw no reduction in episodes. Now take approx 5mg as a pip but not convinced that helps. But perhaps I should try a low dose again as frequency has increased. Weirdly it seems I decide what to do and the GPs just say fine.
I am similar. And the ans to your question is MOST definitely. Whether in Paroxysmal AF or Perm, you are at the same risk of stroke. Remember strokes caused by A Fib strokes can be the most devastating. Yes go on Apixaban or Xarelto and be 90 pct safe.
I can’t comment on the DOAC. I’d be surprised if a medic would give you them with a risk score of zero. I would be more concerned to get some medication to bring the AF under control. Episodes every 2-3 days must be quite disruptive.
i’m really surprised that this issue hasn’t been bought up by whoever is dealing with your case as surely it’s so important. It definitely needs addressing as a priority (from the little I know:))
I’m Interested in that you declined the possibility of a mini maze and chose a more standard ablation (from someone who seems to be very highly respected? ). Any chance you could give you a reasoning for this as I’ve always thought the minmaze seems to be the most successful procedure?
Decided with Mr Hunter that in my case a very good chance standard ablation would be successful, to go for that first as less invasive and speedier recovery… I’m still slightly on the fence but waiting to speak to Arrythmia team at derryford about ablation and then make final final decision
Sounds like they’re given you good choices and info. I’ve had 3 ablations, with last one being called a vein of Marshall version that my new specialist is investigating for improved results. It’s currently held slightly the longest (just over nine months now) although I was out of sinus after long (aussie) aeroplane flight for a week but fortunately popped back in). my next thoughts were for some sort of mini maze which I’m not being offered here in Liverpool (not a complaint Liverpool heart and chess has been fantastic and I haven’t pushed for this option actively). I’m not the greatest researcher, but minimaze does seem to have pretty good results but as you say, longer recovery. All my ablations were pretty straightforward, although the last one under general rather than local anaesthetic was preferred to be honest. Oh for a crystal ball! Obviously I hoped like with some people one ablation gives them multiple years relief but I was not that lucky (my AF is pretty moderate so I’m very lucky that Way). I wish you all the best and a successful outcome.
• in reply toLewis1234
When you spoke to Mr Hunter did he discuss what his approach is? My understanding from Mummyluv is that he does a 'belt & braces' approach which involved fairly extensive 'mazing' on the external heart and also an internal ablation (for Aflutter). She told me that his approach is generally aimed more at people in permanent/persistant. I'm interested to know if he alters his approach for people with PAF.
I'm waiting on a referall to him but am probably going to go to Tokyo to have the Wolf mini maze (or Dr Ohtsuka's version of it) which is more minimal than Mr Hunter's procedure. I suffer from lone PAF and really want it just done with. I don't tolerate the medications well.
Lewis1234• in reply to
Sorry, I don't know exactly what his approach is but it seems very thorough and as you say 'belt and braces', he also clips the appendage, to be honest he spoke in a lot of detail about the procedure that I didn't exactly understand, he said it has to be PAF or persistent/permanent and no other heart conditions and a reasonable BMI to be considered by him. MummyLuv seems to be the font of all knowledge on this one... I am only opting for the regular ablation first as that can be done more locally to me, quicker recovery and there is a pretty high chance that it will be a success.. and oh how lovely to be 'just done with it!'
• in reply toLewis1234
I guess my question was whether he alters his approach depending on the stage of AFib that the person is in. I'm not needing 'belt and braces'....yet. I'm going for the mini maze because I don't want to take any medication (including anticoagulant) for the rest of my life and a regular ablation doesn't offer that.
Good luck with your ablation, I hope it does the trick.
You will get loads of differing views on here depending on their personal experiences or circumstances. Some people will actively disagree with their cardiologist/ EP/GP because it suits them to do so.
In the end it’s your personal choice to take them but do bear in mind that at your age and with the Chads score of 0, the experts consider a spontaneous internal bleed more likely than a stroke if you do start on ACs.
You are 5 times more likely to have a stroke with AF but also remember that only 1 in 7 strokes are AF related.
I am in the same boat, 61 and 0 Chads score. My cardiologist said no to ACs at the moment but will review every 6 months depending on circumstances.
I’ll take the experts view.
All the best
Thanks and all the best…it’s a journey!
How often are your episodes?
mine would have gone to chads 3 this November being a woman getting to 65..I get a point for that…lol I said why wait? So started earlier . My BP was slightly high too but that’s now under control. I would speak to your dr and voice your concerns. Certainly hasn’t impacted my life at all…haven’t bled any more than normal..apixaban im on.
Reading your comment has given me reassurance. I'm just about to start apixaban and am very scared. Thank you.
It is scary . All these meds now.. never had anything a few yrs back..now statins..bp..anticoagulant flecanide 🙈 needs,must x
I recommend having a look at some AF stroke studies, from the early studies like SPAF which compared warfarin to aspirin to the more recent studies of the newer anticoagulants. Also to know the difference between relative risk reduction & absolute risk reduction. There are no certainties in life but looking at statistics available is the best way to inform yourself of your overall risk. I’m not sold on the idea of PIP anticoagulants because repeatedly it has been shown when looking at study participants with implantable loop recorders that there’s little correlation between timings of episodes of AF & the timing of a stroke. I know in the early days of ablation they hoped restoring sinus rhythm would remove stroke risk but when they studied this it proved not to be the case. The worst thing about AF is the more you read about it the more complicated it gets & although I wish I didn’t have it, I genuinely find it quite fascinating!
Very interesting that ' little correlation between timings of episodes of AF & the timing of a stroke'. Also 'they hoped restoring sinus rhythm would remove stroke risk but when they studied this it proved not to be the case' I have heard this and it seems strange to me as how can stroke risk be higher if in SR?? Is it just because some can be asymptomatic and believe they are in SR but are have episodes?
So does that mean that I am no more risk of stroke having a 14hr AF episode every 3 days than when I was having them once every 6 weeks? How is this possible as I believe the most likely reason for a clot is clotting in and around the left atrial appendage forming 'during' an episode?? Doesn't really make sense, to me at least, if someone could enlighten that would be much appreciated.
From everything I’ve read & all the cardiologists I’ve listened to that does indeed appear to be the case. Believe me I could waffle on for hours about all the things that don’t make sense with AF.
There’s a good video on YouTube by York Cardiology (Dr Sanjay Gupta) called Stroke - Who’s the Daddy? He does a good job of outlining the puzzling aspects of AF & stroke & how the evidence often contradicts logical suppositions.
My cardiologist just put me on them due to my AF in remission just waking up. I am pretty sure he would do the same for you.
You could reduce your intake of foods high in Vitamin K, the blood clotting vitamin. Lots of healthy foods are super high in vit K. Drinking 2 litres of water daily on top of all other fluids and watching salt intake will also help to naturally thin blood.
The thought of and fear of a stroke made it easy for me to take my Cardiologist's advice to start AC (Edoxaban - 60mg once a day) with no side effects after 5 years. Interestingly, the topic of possible brain bleed (mentioned in this string) was never discussed. May have to relook at the stats on this. In your case Lewis1234, definately chat with C soon and make up your own mind. btw, I've been on Statins for the pas 10 years.
I think that anticoagulants are a must for any AFIB to be honest, but that’s only my personal opinion.!!
I’m now back on them after a 3 to 4 year break due to my chads going from zero to one.! I feel a lot more at ease knowing my chances of stroke are decreased whilst taking them.👍
Ask your doctor or cardiologist for their advice and let us know how you get on.
All the best
Ron👍
I am grateful daily for these meds! I take Eliquis metoprolol succinate and Flecainide. I believe I would have had a stroke by now without them. Pretty sure that back in the ‘50’s that’s what killed my grandmother. As a nurse, I have seen fewer strokes and the ones we see, less damage. Talk to your EP. One of the hardest things I’ve had to do was put those pills in my mouth. I was terrified. But 5 years in, no more episodes except for a couple of blips when I’m anxious. My PAF is/was symptomatic. Good luck and I know you’ll come up with the right decision. I didn’t want to gamble.❤️
I think you’re absolutely right - I’d want to be in your position and being on Apixaban as was my Cardiologist and talking to him about it means a lot
I think you should start anticoagulants right away. Your afib is not going away, and the effects of a major stroke won’t go away either!
JimF
I spoke with both my cardiologist and primary care doctor. At a score of 1 due to being a female and no other health issues they both recommended not taking them. All drugs have side effects and long term use of them should be taken into consideration also. I will start them when my risk level determines that I need to. My aunt had Afib and on A/C but still had a stroke. Unfortunately it’s all a gamble. We just have to make the best choices with doctors we trust.
NHS Scotland guidelines are that patients with af require any coagulant. I was resistant but agree to Apixaban which is more manageable than older ones. Had several changes of AF meds and now on Amiodarone and Apixaban.i bruise a bit more than previously but I did that anyway. So far so good.
Meant anti coagulant, not any.
interesting… incredible amount of differing info from the medical professionals…
Yes you should be on anticoagulation meds! I AM in AFIB all the time since last SEPTEMBER! I am on a blood thinner!
A bit late to reply here but I'm wondering how many of us are offered the lower dose Apixaban - 2.5mg? Research suggests that weight and age is a factor in prescribing ACs which may make sense when a 16st 50 year old is being given the same dosage as an 8st 75 year old? Gender may also be factor. Just wondering?
I take Edoxaban, but I’m on the lower dose of 30mg, because I’m under 60 kgs and over 70.
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