Off warfarin

[Kaiser78]

My ep has stopped me from taking warfarin saying it's more likely to do me more harm than good, she said my Chad score is 0, but I can't help but worry about a stroke, because I still get af episodes now and then, has anyone else been told this???

[sportscoach]

Hi Kaiser78

I was in exactly the same position my ep told me to stop and I was also a 0 chads but there was too much Russian roulette involved for my liking and took the decision for the time being to stay on warfarin.

I recently had question answered by Dr Gupta at the Liverpool Heart and Chest Hospital...here is a copy below hope this helps....

Thank you for submitting your question. It has been chosen for the Autumn newsletter and the expert answering questions is Dr Dhiraj Gupta, Liverpool Heart & Chest Hospital. Please find his response below:

“Treatment for AF has come a long way over the last 20 years. How do you see treatment for AF evolving over the next 10 years?

Although stroke-risk stratification has improved immensely over the past 10-20 years with the use of CHADS2 and CHADSVASc scoring systems, these tools remain rather imprecise. For instance, many physicians have treated unfortunate AF patients who have suffered from stroke in spite of low CHADSVASc scores. As such, we need to do better in individualizing oral anticoagulation prescription for AF patients by assessing their stroke risk more accurately. This assessment may involve gene tests, and or blood tests for markers of inflammation and clotting. I see this individualized risk assessment and anticoagulation prescription becoming more refined over the next 10 years.

The strong relationship between AF and obesity has been established only recently. In the future I see obesity becoming a target for intervention in its own right in our battle against AF. This will involve patients taking on more responsibility for their AF management by favourably modifying their life styles.”

[Vony]

Yes Kaiser, I have a score of 1 but that is because I am female and it is my only risk factor so it goes down to 0. I too worry all the time about stroke i have episodes daily. At the same time, if I were on warfarin, I would worry about a bleed. It is just crap having a condition like this that feels like a no win.

[RobertELee in reply to Vony]

"I have a score of 1 but that is because I am female and it is my only risk factor so it goes down to 0"

Why does it go down to 0? Are you massaging your figures Vony, you naughty girl?

To Kaiser. Warfarin, with its food restrictions, blood tests etc, can be a lot of hassle for some but this is 2015. We have NOACs. Why anyone would want to risk a stroke for the sake of popping a pill is beyond me. It's so simple - no monitoring, no blood tests, eat what you like - and the risk of a serious life-threatening bleed (unless you have a particular propensity which your doctor should have explained) is absolutely minimal - less than the risk of stroke in most cases.

[Vony in reply to RobertELee]

No Robert. NICE guidelines and research indicate that if your only score is based on gender then it is discarded. If I had other risk factors in the ChadsVasc risk assessment, my score of 1 due to being female would count then.

[RobertELee in reply to Vony]

I stand corrected. So whereas hypertension or diabetes in a man scores 1 it counts as 2 in a woman (if you only had the one condition). Add the pain and discomfort associated with many of your reproductive functions (compared to ours) and we can see that you ladies really did draw the short straw. Respect!

It'll be our turn in the next life......

[Vony in reply to RobertELee]

Hi Robert. Hypertension and diabetes would still score 1 NOT 2. Being female scores 1 and remains if there are these other risk factors. The only risk factor scoring 2 is previous stroke or TIA as it is such a strong indicator it will happen again especially if one has AF.

[RobertELee in reply to Vony]

I understand. What I meant was, if I just have hypertension my score would be 1 - if you just had hypertension, your score would be 2.

[Mamamarilyn in reply to Vony]

All the indications point to the fact that worry/stress is a trigger in both AF and stroke. I would no sooner not be on an anticoagulant than go out in the nude (not that anyone would notice of course...haha).

Bear in mind that Warfarin is not the only anticoagulant available. As it happens my INR never really stabilised on Warf so I switched to one of the new anticoagulants (NOACS) . I had the 'bleeds' discussion with my anti-coag nurse who reassured me a) that the term only refers to major incidents, which are comparatively rare and b) that Hospitals have procedures in place to deal with such events. So the worst case scenario is that a comparatively unusual event can be dealt with whereas the after-effects of a stroke can be with you for life. Isn't

it a no-brainer?

Apart from the meds angle, have you tried meditation to calm your anxiety? It's not a quick fix but practised regularly it can really help. There are loads of online sites....Headspace is my favourite.

I wish you well Vony x

[Kaiser78 in reply to Mamamarilyn]

I'm just a born worrier, but my af starts when relaxed ie in bed sleeping, I don't get it as much as some, so it's not as bad

[Therealsue]

I've had a successful ablation but I've opted to remain on rivaroxaban despite a 0 score. Not necessary, but it makes me feel happier. There are other though who are happy to stop taking anticoags in my situation. I think it's a matter of personal choice and my EP left it up to me to decide.

[Hidden]

Personally, I wouldn't worry so much Kaiser. I am CHADS 0 and my cardio said no need to go on anticoags and that is with Factor V Leiden which is a gene issue that makes you more likely to clot.

My cardio said if I have an episode that doesn't correct within 12 hours I should start taking Rivaroxaban (one of the new instant anti-coags)...suggest you look into this as much more convenient in your situation.

That said, you don't say how often you have episodes and if its more than say once a month I would take more action e.g. drugs, supplements, lifestyle changes, advice from a Naturopath and possibly anti-coags.

Many here will say you must go on anti-coags as it is otherwise x5 more likely to have a stroke. However, this is not quantified. If the risk is 1 in 5000 on anti-coags and 1 in 1000 without, I'm happy avoiding another potentially damaging (internal bleeds) drug.

Thank you Sportscoach for your post quoting Dr Gupta excellent advice. He refers to gene testing, which I have had and evidently around 15% of the population (if my memory serves me right going back 15yrs when I had a leg blood clot from a 5 hr car journey) have my above mentioned condition with most not knowing it.

Personally, I use not opting for anti-coags as a driver to get me to exercise more ("sitting is the new smoking"), achieve my optimum weight and take quality food and supplements....so far so good.

Hope something in the above helps.

[souljacs4 in reply to Hidden]

HI orchardworker can you tell me where you had your gene test .

[Hidden in reply to souljacs4]

It was a straightforward out patient test done from a blood sample by the NHS where I was referred. You may be able to twist your GP's arm in view of the Dr Gupta quote/other evidence. I had it done because I was a fit 47yo and a clot was a big surprise.

[souljacs4 in reply to Hidden]

Thank you I don't think my GP would agree but I will ask. I am female and will be 65 in a few months so need to make a decisions on AOG . I had a Plac test done and results were good I have seen two EP both said I don't need them also my GP is saying the same thing so confused.

[BobD Volunteer]

As I have said before and elsewhere, the decision should be made in joint discussion with patient and medic based on an examination of all the risks both CHADSVASC and HASBLED. This latter score helps to assess your risk of serious bleed and obviously if your HASBLED is higher than your CHADS then you don't take Anticoags.

One thing I notice is that people tend to under score either through ignorance or a latent wish not to be on a/cs. For example it is not commonly understood that scores cannot be removed. IF you are on any drug to reduce BP for instance then you have a score of 1 regardless of whether your BP is up on not. You have "treated" high blood pressure but you don't just ignore that.

I used to think that treated AF ,post ablation for example, did not carry the five fold risk but I was convinced by experts that this is not so and the risks continues even if you don't have episodes. I am told that changes in the atria caused by the AF could enable clots to form. We must also remember that facts have a finite life and what we understand today may well change in the future. The treatment of AF is still a very young science.

In reality FOR MOST PEOPLE the risk of a serious bleed is actually very low but heavy drinkers or those with stomach ulcers at at higher risk.

In the end it is a judgement call as there is no doubt that for every thousand or so people on anticoagulants, some will be saved from strokes and some may be at risk from the affects of the drug. It must be a personal choice.

Bob

[CDreamer]

All very good points made above. There is no right/wrong answer, just what is best for you.

I also score 1 for being female and AFTER AF was ablated I chose not to continue on anticoags which my EP accepted but asked I keep it under review, especially when I turned 65 in a few months time. Very personal choice.

Taking any drug is always a risk to benefit ratio and that is something only you can decide, along with the advice of your doctors. In your case it seems you feel differently to your doctor. I would also add individual factors into your decision process and if you are worrying about something this has to be a contributory factor which I would tell your doctor about and be quite assertive that you would feel safer on anticoagulation and ask them to give you good reasoning why they think you would not be safer from stroke risk with AGs. My understanding is that NHS patients may refuse a treatment but not demand it so one has to present a logical, reasoned and persuasive argument, seems you have quite a lot of data you can put together just from this post.

Good luck.

[bridget54]

Yes. Me. For the same reason and my CHADS score was 1( because Im a woman ). Like you Im a bit worried about it but I put my trust in my EP initially so I thought why shouldnt I trust him now?

Completely understand though

[Kaiser78 in reply to bridget54]

I'm a young 37, and I'm very fit and have good diet, it's my job to keep people fit & healthy, so I've put my faith in my EP, she said it was in my best intrest to not take them but the thought of a stroke scares me.

[Annekw]

Hi my Cardiologist says better safe than sorry,so I'm staying on Apixaban! (I wouldn't be so keen on staying on Warfarin tho!

[Hidden]

I don't take warfarin I tend to take Beecham powders once in a while as this has 600mg of aspirin in one powder . Like you I am afraid of having a stroke then their is the risk of bleeding . So at least once a month I take the powders, this way I am stopping my blood clotting and also it's not enough over a month to cause any bleeding . Normal aspirin dose is 75 mg per day totalling 2100mg per month, of anticoag in your body, Beecham powders is 600 mg per month. It not a lot but logically it will help.

[George2467814]

Reading all these and other previous comments I am confused and realise I need further education on AF. I am now in 80s told 3 years ago when slow irreg heart beat that I may need pacemaker later meanwhile on Bisoprolol 2.5 mg Warfarin 3.5mg Amlodipine 10mg as I need to control BP. But have never been told about Seeing an EP these other points about AF episodes etc I feel pass me by all I get is palpitations and very slow irreg heart beats..usually these symptoms are when in bed...can't really say I suffer anything worse perhaps that's why I have not been referred elsewhere.Did raise with GP about newer anti coags he said I should stay on warfarin [cost?) as proven long term and can only say I am unaware of any side effects.Have INR checks monthly rarely outside 2-3 range...BP can vary more often...suppose it's all about balance of benefits / side effects.