Warfarin v New Anti Coags

[MammaCass]

Going to see the Doctor next week to see about going on the new anti Coags, I've been on Warfarin for over a year and get on fine, however, every time I've been on holiday, when I come back my inr has been all over the place. (I know it's the red wine that does it). It takes about a month to six weeks to get it back into range, so hopefully she's receptive to my request!!!!!!

[BobD Volunteer]

Wags finger and smiles.

[MammaCass in reply to BobD]

Yes I know, but what's life without the occasional glass or three.

[BobD Volunteer in reply to MammaCass]

You know me! Mind you I don't do red these days as it gives me headaches after a few glasses. Our 2014 wine is ready on 8th May so Palletline here we come. 200 bottles should ,last till Christmas if the summer isn't too hot. lol

B

[MammaCass in reply to BobD]

There's a little vineyard close to where we stay, and for some reason I don't get a hangover with the red, so I'd be silly to drink anything else!!!!!

[Rellim296]

I will follow your progress with interest MammaCass! I have not mentioned my lack of progress with INR stability for a while because it's boring but I have yet another a test next week (third in 3 weeks) followed by a GP appointment.

[MammaCass]

Mines pretty stable Rellim, while I'm home, but I go to Portugal quite often and when the nurse tests my inr when I get back it's always out of range. The testing is really frustrating. Hope your appointment goes well

[Rellim296 in reply to MammaCass]

Thanks. Yes, INR tests can be really frustrating. I find them a real hurdle because there's usually something I don't like - either I'm in trouble because I'm out of range (which I find a bit bothering) or I'm at something like 2.0 and they tell me to come back in the distant future for the next test. When I was sent off for 56 days my INR was 3.7 at the next test. Apart from losing / gaining the odd few kilos, I don't do much that's naughty.

[MammaCass in reply to Rellim296]

Have you asked about the newer anti Coags at your surgery?

[Rellim296 in reply to MammaCass]

Sorry for the tardy reply - had a day out in the sunshine. Yes, apixaban was mentioned to me about 18 months ago but I am scared of warfarin and more so of NOACS. As I had to be on warfarin prior to an ablation last March, I didn't switch and have stuck with it, drifting over and below the therapeutic range much of the time. I have had an INR of 2.0 eleven times and I find it an unsettling INR as it could take no more than a couple of spoonfuls of spinach and whoops, out of range. I cannot bear to fork out good money that would take me to Paris for a weekend and buy a Coaguchek. I am hoping to discuss all the options with my GP, though I am seeing him at my next appointment, not the practice's anticoagulation specialist.

Had I not had so many wise words from this forum I might well have given up warfarin and been at risk of stroke.

[MammaCass in reply to Rellim296]

I didn't see tardiness rellim just good honest open discussion. For me warfarin has been a comfort blanket, keeping me safe from the bogey man, but now I feel secure enough to try out something new. Small baby steps will get us where we want to be. I to would rather spend on a few weeks in Portugal than on a machine and hopefully soon, I can go without having to be concerned about green veg and red wine x

[Rellim296 in reply to MammaCass]

I have to say the sudden tragic death I foresaw on warfarin following some catastrophe hasn't happened to me and I do feel slightly more relaxed, and I think acceptance of the NOACs is gaining ground too, so good luck to you - it would seem a logical way forward for you.

[Hidden in reply to Rellim296]

Hi Rellim,

I have had the same thoughts/ feelings about discontinuing Warfarin then I spoke to Vikki from AFA who reminded me that even though my Ablation had been a success I still have AF although at the moment it is silent.

[Rellim296 in reply to Hidden]

Yes, this is one of the things I have learnt thanks to the forum.

[PeterWh in reply to Rellim296]

My INR was swinging widely (could swing by 1.5 or more from one the weekly test to the next) and because of warfarin intolerance I was not having any "green veg or salads, etc". since I was out of range a lot (usually under) and I was having an ablation (which significantly enhances the risk for a few weeks) I decided to but a CoaguChek and because I thought the few hundred pounds was a good insurance policy as after all if I did end up with a stroke it would cost me many times that financially let alone the physical and mental side of having a stroke.

I am very glad that I did because on the Wednesday before Easter my INR was 2.7 but by Saturday it was 1.9 then 1.7 Sunday. Typical that it happened on the long weekend. I increased my warfarin and (knowing not to do it too quickly as a delayed reaction) and got it back in range (2.5 to 3.5 for me). With hindsight I should have gone to A&E on the Saturday and got them to give me an injection to give me protection more quickly.

I searched on the internet and found that by buying it from Roche (the manufacturers) was the cheapest and you can buy it VAT free from them.

[Rellim296 in reply to PeterWh]

You see, this is what worries me (or one of the things) about warfarin. 2.7 on Wednesday and 1.7 on Sunday, Peter Wh? That's a big drop!

Before my ablation I ended up eating the same few veggies (sweet corn, fennel, onions, mushrooms, I forget what else) just to keep my INR in line. Luckily at the time, my other half was also on a diet - a very strict one which I remember permitted 2.5cms of peeled courgette. We ate quite monotously for about 6 weeks.

The info about buying from Roche is most useful, thanks.

[PeterWh in reply to Rellim296]

Well I had bigger swings much earlier on before stopping the green veg and salads. You need to recognise (I was told) that it is probably only 1% who get big swings and have intolerance to warfarin. It tends to be worse if I have bene suffering with diarrhoea. Also the problem was I was typically on 2.5mg or 3mg of warfarin which meant that when I was given an extra 0.5mg that represents a 20% increase to 3mg. Interestingly from about a week after I had the ablation (although I went back into AF 70 hours later) the swings have been much less (up to 0.2).

[Rellim296 in reply to PeterWh]

It's such a personal thing. Some lucky people seem to have a steady INR and are happy to go months between tests.

[Dodie117]

Have you considered getting your own machine and doing some self management?? You could then try eating more spinach etc and/or reducing dose. This is my approach and I keep in range.

[MammaCass]

I did consider it Iallym, but the cost and then the strips, which some doctors will prescribe and some won't. It goes out of range only when I travel, so I'm hoping one of the new Coags will solve the problem

[Mrspat]

Yes - who really wants to spend their life worrying whether any deviation from the norm is going to cause a problem.

[MammaCass in reply to Mrspat]

Hi Mrspat, yes, I really don't want my life to be dominated by testing and being worried by what I eat .....or drink for that matter. I'm vegetarian and eat a varied diet, I drink the odd glass or two, I exercise and enjoy my life. When I first developed AF it was devastating, this site helped me come to terms with the condition and the experiences of others gave me the courage to go for an ablation. I haven't looked back since. Yes I get the odd "old feeling" but it passes quickly. I feel I've been given a second chance, and if the newer Coags can stop me being chained to the doctors surgery, I'm up for it.

[Mrspat]

Good luck MammaCass. I've been on Rivaroxaban for nearly a year and have no regrets.

[MammaCass in reply to Mrspat]

Thank you

[jennydog]

I've been on dabigatran ( Pradaxa ) since my ablation last August. It was prescribed by my EP. My INR had been very stable until I went on a sugar-free diet. It quickly nose- dived from 2.5 to 1.4 and then never got back above 1.8. This is similar to the change of food that you might expect on holiday ( and I don't drink/like alcohol )

Pradaxa is so easy but, truth to tell, I don't have anyway of testing its effectiveness.

[MammaCass in reply to jennydog]

But isn't that the point Jennydog? The new anti Coags work in a different way to warfarin to keep us a the right place so testing isn't necessary.

[Finvola]

Yes, the effectiveness of the NOAC's is something to be taken on trust. I've not been on anything except Apixaban, so I do trust it to do its job, never having had INR tests - which sound like a nuisance to my untrained eye (ear?)!

Interestingly, when I had my annual blood tests for kidney function, the nurse was quite animated about 'these new anti-coagulants' and how 'you never know where you are with them because there are no regular blood tests'.

[MammaCass in reply to Finvola]

I have to say I'm happy to take its effectiveness on trust, there have been trials and they've been about for a while now and most people seem to accept that it's doing its job in keeping the blood flowing. I take other medication, the results of which I have to take on trust that they too are doing the job. Warfarin was the only effective treatment for so long, it's going to take time (even in the medical profession) to accept that the new drugs work differently but are just as effective in keeping us safe.

I just want to get on with my life without being tied by blood tests to the surgery

[meadfoot]

Rivaoxaban has been my anticoagultion of choice 2years on and still fine no worries with it. I just take it with my supper and forget about it.

Dee

[MammaCass in reply to meadfoot]

Fingers crossed meadfoot, my doctors surgery has been very supportive so hopefully they'll see this as the next logical step for me

[Hidden]

Hopefully the watchman device becomes available to everybody as standard, helping people live lives without the worry of stroke, or the medication to help prevent it

[MammaCass]

I haven't heard of this Juggsy, tell me more

[Hidden]

Google it, it looks very impressive if it works

[PeterWh in reply to Hidden]

The team led by Professor Schilling have been doing trials at Barts and London AF Centre. Link to their private site giving some explanation is londonafcentre.co.uk//atria...

[PeterWh in reply to PeterWh]

Just picked up post from the AFA on this. healthunlocked.com/afassoci...

[MammaCass in reply to PeterWh]

Very impressive!!

[MammaCass]

When they start doing it the same time as the ablation as a matter of routine, I think I might be interested, it really does look impressive

[Jenbo6]

MammaCass - I had been on300mg Aspirin for many years and when all of the reports were published about its not being of any use if you had AF, I spent some time researching on the Internet all about these NOAC's to decide myself which suited me best. The research studies came up with a lot of data which I could understand and for me, Apixaban came out on top. I was frightened of Warfarin because I'm a vegetarian and was concerned about my green vegetable intake and also if you go out of range, then is your blood too thick or too thin - no use at all. My GP was very reluctant to prescribe due to the cost but an email to my EP resulted in my GP agreeing with his recommendation for me to go onto Apixaban. I take two a day at twelve hour intervals, have a blood test every six months to check liver and kidney function and that's it. I've had a big tooth extracted with minimal bleeding and the usual bumps and scratches which hardly bled. As it has a twelve hour life in you body, if I had a major bleed it wouldn't be a huge problem to keep me alive for that long( well, in theory !!) Go for it. Release yourself from the Warfarin clinic and and all it entails. NICE wouldn't allow these drugs to be prescribed if they were dangerous. Good luck. Jenny

[PeterWh]

When formally diagnosed with AF (persistent) my GP said that she thought one of the new NOACs would be the best solution but she wanted the EP (she was referring me to) to decide. She said that some EPs had a preference depending on the situation and medical conditions of the individual. I was actually put onto Apixaban and was on it for 3.5 months but had to go over to warfarin so as to have an ablation. Certainly less hassle with NOACs (mind you I am a little biased since I am one of only a very small percentage who have an intolerance to warfarin which has made controlling INR much harder and caused wide swings).

[MarkS]

The fact that NOACs are not considered to require monitoring is their big selling point. However as this article points out:

medscape.com/viewarticle/84...

"Should NOACs be monitored like warfarin ---by pharmacists?", there is doubt about this claim. At least with warfarin you know if you're under or over anti-coagulated. You don't with the NOACs.

However if you are on warfarin I would suggest a Coaguchek is an absolute must, and preferably with self management as well.

[PeterWh in reply to MarkS]

I searched on the internet and found that by buying it from Roche (the manufacturers) was the cheapest and you can buy it VAT free from Roche.

[Vdl1]

Buy a self testing coag machine...I live over half the year abroad and find it invaluable ...then you can alter the dose to take in to consideration the life style of moment....it's not rocket science.....