Going on Warfarin

[BuckleyBoy]

Hi, I'm 66 and have been experiencing paroxysmal AF for almost 20 years, induced by exercise. I was a regular gym attendee until I retired 6 years ago and have been a keen cyclist for 20 years (av. 50 - 100 miles/week, summer/winter). AF is brought on by higher effort or extended endurance, but doesn't bother me at the time, and usually stops when I rest. I am otherwise in good health, ideal BMI and no other co-morbidities. CHADSVASC score is 2 I believe.

Anyway, last year a cardiologist recommended I reduce exercise effort level (which I mostly have) and take Rivaroxaban for stroke risk. I was referred to my GP for blood test (liver function?) and discussion prior to prescribing the drug. I avoid taking ANY medication as far as possible as I am always wary about side effects. In the case of Rivaroxaban there seems to be a few potential and some bad press in the US. I have had some digestive / stomach issues so my GP said I may also need a proton pump inhibitor (PPI). Whoah. Stop right there I thought. He also gave me the option of Warfarin. Long story short - I have been thinking about it for 12 months now, have decided I should address the stroke risk, and have an appointment this week to discuss going on Warfarin.

What questions should I be asking? I am aware of some of the downsides of Warfarin and relative 'advantages' of NOAC's.

If the GP agrees I would like to self monitor INR levels with a Coaguchek (at my expense).

Apologies for the long post.

[BobD Volunteer]

You are wise to go onto an anticoagulant as I am sure you know about your raised stroke risk.

I have been on warfarin for about 13 years now and maintain a largely regular INR testing on average every 8 to 12 weeks as I am so stable. It may take a while to become stable but what is most imporatant is that you do not change your diet for warfarin but make warfain fit your diet. Too many people try to balance INR by food intake but it is far better to keep to a regular but mainly consistent diet . The amount of warfarin you need to take is not important. ONLY the resulting INR is. Mine is stable between 2 and 3 on a weekly does of 33-34mg spread over the seven days and has been forever. I never consider what I eat (except broccoli which I don;t like anyway ) and even occasionally consume cranberry sauce . Shock horror!

I do not bleed any more frequently that normal even working with machinery and race car engines but if I do scratch myself clearing brambles from my hedge rows it might take a few minutes to stop leaking.

Self testing is a good idea so long as you can be regimented about it and many CCGs in UK will support this by prescribing the strips if you buy the machine but you will need to be over viewed by you medical centre in most cases. Some CCGs do resist this idea despite NICE giving approval for it so you need to check with your doctor..

[doodle68]

Hi Buckley Boy welcome. I have read all I can on NOACS and came to the conclusion Apixaban is the best of the lot with less side effects than Riveroxaban . Maybe do some reading up and see what you think.

This video may help...

healthunlocked.com/afassoci...

[Hidden]

Hi! I've been on warfarin 14/15 years and have been self testing with Coaguchek meter for the past few years. It is so much simpler than making appts at hospital or surgery plus of course you can perform a test ad often as you like should you be concerned.

I wonder why you are against the NOACS? I have to say that if I was starting out on anticoagulation now I would opt for one of these. So much easier although there are some drawbacks. I've thought about changing now myself but a bit reluctant in case I start somethingoff....its a case of ' if it ain't broke why mend it !'

Sandrai

[Thomas45]

I started with Warfarin. Not only wouldn't the reading stabilise but I had a painful rash on my arms (later found to be nothing to do with Warfarin), so my GP put me on Rivaroxaban. It didn't agree with me. Shortly after taking Rivaroxaban I started with pains throughout my body. I was on it for 12 days, and while offered other NOACS I decided to go back to warfarin and buy my own Coaguchek meter. I send my readings in by email whever they're required. Having my own meter gives peace of mind as I can test myself when I want.

Because I felt overweight about 3 months ago I started a self enforced diet, with a salad every day as my main meal, and no wheat. I have gone down 3 holes in my belt. My dose of Warfarin has gone up over the 3 months from 5mgs to 6mgs. As Bob says adjust your warfarin dose to what you eat, not the other way round.

[Hidden]

Hi BuckleyBoy,

I was diagnosed with paroxysmal AF in Jan 2010, aged 65. I've been on Warfarin ever since and will be on it for life. It did take a while to stabilise the INR readings but it settled down. I have made very few concessions in terms of food and drink. No problem with Cranberry products as I dislike the stuff anyway. I still eat the forbidden green veggies as well as everything else. I have cut back on my alcohol but not because of Warfarin but because my partner thinks I should. I do diet, but, my diet is nothing to do with weight loss, its a method I use to treat the AF as my AF is vagal nerve in origin. This has no impact on my INR either. I agree very much with BobD and Sandra, and yes, 'if it ain't broke - don't fix it'.

I have used my Coaguchek XS device since April 2011 and had no problems. At the time I lived in East Surrey and had tremendous support from my GP, even including initial training. Ongoing monitoring of readings too over time. When I retired I moved to Cornwall and the first surgery I dealt with didn't support self testing. I eventually changed surgeries to one that did and went back to using my device and again no problems ever since. I get prescribed my test strips, no problem. Every 10 tests or so I take my device in for a joint test. One drop of blood on their machine and one on mine simulataneously - INR readings are then compared. In most cases both devices have been + or - 0.1 ........... no greater. Quite a bit of the time they are identical readings.

I often travel to Australia and take my device with me to keep an eye on things and to report back INR readings if tests fall due when I am away. Over time I have found these trips tend to push my INR readings up slightly, to well over 3.0. In which case I am now so confident with the medication I adjust my own dose. I also have annual blood tests to check on kidney/liver function etc on account of the medication I'm on. My therapeutic range is between 2.0 and 3.0 with my target INR being 2.5. Mostly my readings fall between 2.4 and 2.7.

I am still working part time, driving a bus in the tourist industry and loading/unloading passengers baggage. Occasionally I give myself a knock or a bang and sometimes cut myself when I'm a bit careless - but - hey ho, I keep a small medical kit with me, apply a dressing if needed, keep calm and just carry on. Not a problem. Warfarin and Coaguchek XS are my best mates (along with a few other drugs too).

But, I have to say there are many out there who just can't do Warfarin and all these new drugs (NOAC's) are a blessing for them, absolutely. So, really, its horses for courses.

I must also say, I have had to come off Warfarin twice, once for a CT Scan (with no bridging anticoagulant at all) and the second time in Nov 2015 when I had a partial right knee replacement and when immediately after coming round after surgery I was administered a bridging anticoagulant Fragmin, to last until I could get the Warfarin back into my system. No problems at all, either with AF kicking back in or with coming off Warfarin. I was operated on as an NHS patient in a private hospital.

John

[BuckleyBoy]

Thanks all for your positive comments. I hope my GP will support self-testing.

Interesting "careuney" that you had to come off Warfarin for a CT scan. Why is that?

[Hidden in reply to BuckleyBoy]

To be honest, I can't now recall, it was in Sept 2012 and the issues then have never recurred. But, in both the case of the CT Scan and the knee replacement, even with the Fragmin, it took some 30 days for my body to return to 'normal' INR readings once I'd restarted the Warfarin. In other words from the day I took my last warfarin dose to when I returned to my regular 'normal' INR readings was some 30 days.