AF and related stroke risk

I've been in a discussion this afternoon regarding anti-coagulation and stroke risk associated with AF. Whilst some people here are on anti-coagulants, it seems to me - and correct me if I'm wrong - that most people in this forum are more concerned with the treatment / managing AF than the stroke risk. I'd be happy to hear your opinions so that I can take them back to the next discussion.

[feejbee]

Hi John-Boy

I think that you will have a flood of replies.Most people on this forum are taking anti-coagulants and while most of us are very keen to manage AF as best we can the stroke risk is probably everybodys top concern. It's certainly mine as I have had several TIA's and a stroke directly as a result of AF and not being anti-coagulated at the time.

Fi

[meadfoot]

I think most people on the forum are concerned about stroke risk hence we are keen to ensure we are taking a suitable anticoagulant and recommend that people discuss their particular stroke risk with their doctor and to know their stroke risk numbers to ensure they are protected against a devastating AF stroke.

This applies whatever our AF circumstances are as we know AF gives a five fold stroke risk. Dialogue with our doctors is crucial on this issue so people can decide what protection is appropriate for them.

[Hidden]

I spoke to my EP's registrar just yesterday and said I'm on Warfarin with a CHADS score of 1, and then only because I just hit 65, and I have a HASBLED score of zero. I asked him if he were me would he stay anti-coagulated. He said yes without any doubt. He said you don't want a stroke with AF and the risk of a bleed was very low as long as I stay in INR range.

Hope he's right , I'm sure he is.

Koll

[Aprilbday in reply to Hidden]

Hidden, what is a HASBLED score?

[beardy_chris in reply to Aprilbday]

Essentially, it is an assessment of the risk of taking anti-coagulants.

Google it if you want the exact details!

[dedeottie]

My main concern is stroke risk as when I was not on warfarin I had 3 T.I.A.s although I was supposedly low risk. Now I am on warfarin and have done everything I can to reduce stroke risk so I try to forget it and then my next priority is dealing with and treating A.F. x

[BobD Volunteer]

There are many people, specialists as well as us here< who believe that if you have or have ever had AF then you should be on anticoagulation. The risk remains even if you have successful treatment for your AF such as ablation as many of us have. The changes which AF bring on the atrium can still cause clots to form even if you are not in AF .

I always tell people that you can always stop taking anticoagulation but you can never undo the effects of stroke.

Bob

[checkmypulse]

I have just been diag with AF 6 weeks ago. At 67 with a Chads of 1 GP says no need for anti-coag until age 75 if all stays same. Now since finding this site I learn that anti-coag could be the way to go. It worries me the risk of stroke, but as the AF causes me to feel unwell I need to control it and at the moment that is not happening.

[guitarman49 in reply to checkmypulse]

Hi I'm the same age as you. I had the same problem with my previous GP so I challenged him and asked for a referral to an EP (privately). What a difference and straight away the EP prescribed Apaxiban. I also have IBS , even my GI consultant said to say on a anti-coagulant as he also fully understood what it means in terms of protection for AF.

Push hard , I think now the NICE guidelines are clear and say you need to be coagulated Good luck.

[R1100S1]

Anticoagulant first always

Prospect of stroke more concern to me than effects of AF

[Hidden]

Yes, there is a great risk of a stroke, but for me the greatest risk is before we are diagnosed with AF. I had a TIA before it was known I had AF which has left me with a slight droopy mouth on the right but now I am on warfarin, I really don't worry about a stroke because the effects of AF are much more prominent and I feel the warfarin will do it's job.

[Rellim296]

For the time being, I've got AF reasonably under control, but anticoagulation is a constant worry. I was eventually persuaded, much against my will, to take warfarin in July 2013 and the forum has kept me on the straight and narrow. I am convinced (somewhat illogically, I admit) I'll have a major and possibly fatal bleed. As I think a serious stroke would be a fate worse than death I stick somewhat unsuccessfully with the warfarin but I hate everything about it and am reluctant to contemplate the NOACs. I make appointments with my GP and then cancel them. I find INR tests a huge hurdle and rarely feel comfortable with the result, or the dose or the lapse before the next test.

[kernow43 in reply to Rellim296]

You can soon get rid of one of your worries regarding INR testing by going down the" self test" route.

You may have to fork out for the machine but if you can get your GP or clinic to co-operate, and it seems to me that many are at last coming round to the idea, they supply the test strips and advise dosage.

You then have the ability to test yourself whenever you feel like, particularly if as I was, being concerned with the time lapse between tests.

Having said that I understand you can turn up and ask for a test anytime if you are concerned.

I felt much the same as you about Warfarin and took a while to be persuaded to take it but found, the more I came to understand my condition, that a fear of a stroke soon overcame that and keeping some control over testing helps.

[Rellim296 in reply to kernow43]

Yes, this is probably the route I should go down. But I'm so reluctant. I think I could self monitor and self manage, but I doubt the practice will agree. But their system is so hit and miss. I have had an INR of 2.0 eleven times and I find it very unsettling, but they say it is in range and it's therefore fine and I worry too much. No change of dose, and, no surprise, four weeks later I've usually dipped under. I once had an INR of 3.7 after they had sent me off for 56 days. When did it go up there? I'd had a cold and they did say I could have gone in for a test as a result. I hadn't realised a mere cold, for which I hadn't taken any medication, would be such an influence. I think my dose should have been lower ... This is oh so boring. Don't read.

[kernow43 in reply to Rellim296]

It's alright, I know exactly how you feel. When mine dropped down to 2.1 I considered that borderline, so what I have been doing since long before the practice accepted self testing, is test myself every week, and tweek the dose a mg here or there to keep myself in range although not bothering to mention it. Now they have accepted the self test route, subject to them keeping control, I still do the same. It works for me.

I feel I am the important person to consider here not them, ( I hope their not reading this else I could find myself looking for another surgery!!)

Honestly self testing is so easy, you don't have to self manage just ring in with your readings and they will advise your dose.

[Rellim296 in reply to kernow43]

Thanks for this, kernow. Most helpful. Those who find INR easy are in clover.

The CCG guidelines I've looked at clearly frown on non compliant patients but you are so right that we should be in control, not them! I will consider (once again) what all the options are and perhaps open a new thread some time. I was two days away from an appointment to discuss with my GP but then I had an INR of 2.4 a couple of weeks after one of 2.3. My argument that it was never consistent and always on either of the fringes of the therapeutic range was totally shot down in flames and, feeling deflated and despondent, I cancelled.

[Hidden]

I have had a few mini strokes and now deaf in one ear, my last one happened at warfarin clinic and my Inr was 2.5 on the day, so now take prodaxa and had no problems with strokes since. I am 53.

[kernow43 in reply to Hidden]

That's just wiped out my argument......

Glad your doing OK

[OmaJEO]

I think because a lot of us are on anti coagulants we are concerned with a stroke - I certainly am hence why at 63 I am on Apixaban even though my score is only 1. Yes I want to manage my AFib as well hence Bisoporol. I think every region treats you differently and without this forum would be in the dark.

[Hidden]

Thank you to all of you who replied. It's clear that for you the first priority is anti-coagulation and then treatment / management of AF. I know that this is a tiny sample of the AFA Forum but, I have reported back the response.

I believe the following needs clarification regarding the stroke risk associated with AF:

* is the one year risk percentage for permanent and paroxysmal AF?

* is the risk percentage static, cumulative or exponential in successive years?

I don't take an anti-coagulant because it's currently an "option" and not a "recommendation" and, medical circumstances which should partially resolve this year. Considering the risk of AF related stroke , in the past two years I have had two medical conditions each with an occurrence of less than 1% in the population. Therefore on those odds I need to start evaluating anti-coagulation medication and buying lottery tickets!

Thanks again

John

[Rellim296 in reply to Hidden]

I'm no statistician, but this very low percentage thing is slightly disturbing for those who find themselves in it more than once!

[PeterWh in reply to Hidden]

If it was 1% of the population that would be 640,000 people!!!! A far higher chance than winning the lottery!!

[lingooz]

I am PAF and was still advised to take anticoagulants, been on warfarin a year and no problem except very early days hair came out a fair bit but that has now stopped

[Visitingcat]

Female age 59. I had a stroke while waiting to go on warfarin, was diagnosed with AF by GP Nov 2013 after being so out of breath I could not finish speaking a sentence and awful tight aching chest, I thought I had a chest infection : )

I was told high risk of stroke and watch out for symptoms but anti coagulant not mentioned. I had to wait 6 weeks to see a cardiologist who then arranged for me to go on warfarin and it would be four weeks wait.

On the third week I had a stroke, one at home then another in a + e, was in hospital when my appointment for the warfarin clinic came through.

I was incredibly lucky that the medication they gave me for the second more severe stroke worked and I was left with no lasting effect though it took a full day for my speech to come back, (very frightening, thought my job would be finished).

Clinic seem happy for my reading to be at 2.00, I'm not, I'm going back this week and not waiting the six weeks their next appointment is set at. They have recently left me for 8 weeks and I was at 1.3 when I went back !

Sorry for the long post. Have not posted before but read the boards and really appreciate the advice given and the lovely caring atmosphere here.

[Rellim296]

Hello Cleocat, how frustrating to have strokes while waiting for your warfarin to be started.

Yes. 2.0 is 'in range', even if (on the same dose) your previous INRs have been 2.3, then 2.2 and 2.1. There's no heed paid to trend!

[PeterWh in reply to Rellim296]

Usually before and after procedures (eg ablation) the range may be set at 2.5 to 3.5. Always ask about this as some consultants may just assume that a persons range will be changed by whoever is doing the anticoagulation but since many ablations are not performed within the same trust then things ,may slip through the gap!!

[Visitingcat]

Hello Rellim

After reading poppyseeds post I do find the 2.00 reading a little scary, how awful to have your hearing damaged. This is my second one at 2.00, they increased the dose a little after the 1.3 reading and put the drop down to weight loss, I have a fair bit more to lose so I can't see the problem getting any better.

[Rellim296 in reply to Visitingcat]

Taking more warfarin might be your solution, Cleocat. But my surgery and my pharmacist have both told me I worry too much about INR and if you are out of range, you do still have some protection from stroke if you are taking warfarin. There's no guarantee that you won't have a stroke with a good INR, as Poppyseed has reminded us.

[Visitingcat]

Hi Rellim,

sorry this is the first time I've been able to check the forum today.

I think you are right. I will ask them if I can increase slightly but will be a good girl and go with their decision.

Was in persistent AF but I had a successful cv last June.

One little hiccup a couple of weeks back lasted about 18 hours and all the wearisome symptoms came back for that time so being checked out next Thursday. Not even sure if it was actually Af.

Hope it's gone and it stays away. It's one reason that I'd prefer my reading to be a little higher.

[Hilaryjm]

@Hidden Have you viewed the YouTube videos by Sanjay Gupta on this point? He reckons it is not the AF that causes the stroke, but the company it keeps. In other words, weight, high BP, diabetes, and other pro inflammatory factors. So if you have those other conditions, the first thing to do is change your diet and/or lifestyle to reduce those issues. This is what I've done. I still have PAF but feel loads better. Still taking rivaroxaban as a precautionary measure though.

[Hidden in reply to Hilaryjm]

Hilaryjm you have found a very old post here with several of my replies (as Rellim296) on it.

I have left far, far behind all the difficulties warfarin gave me and have been blissfully happy on rivaroxaban (which seemed daunting before I tried it) for over three years.

[Hilaryjm]

Hello, sorry about that, I noticed too late how old your post was. I am very glad you are now settled on rivaroxaban and that in general you have learned to live with AF. Thank you for responding anyway!