Warfarin: Well initially i was not keen... - Atrial Fibrillati...

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Warfarin

Chris147 profile image
48 Replies

Well initially i was not keen to go on warfarin simply the inconvenience of having tests and working. However i eventually from last august had a break for some 6 weeks of visiting the hospital as my inr was 2.3. However when i went back and got tested my inr had dropped to 1.8 so back to weekly testing. I think the drop came because j went on a diet and was eating more healthy. I didnt have a clue about the foods i should avoid. Until i went on the af website so to learn that peas olives blueberries etc are not advised. I am now considering changing to one of the new drugs but i would welcome opinions about the pros and cons of the new drugs. I had contemplated getting a testing machine although initially my gp wasn't keen on prescribing them i think because of the cost of the strips but offered me the new drugs which he hadnt before. My pharmacist said they are good but costly i think i am worth it as i have worked for 45 years this year. Thoughts please.

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Chris147
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48 Replies
Finvola profile image
Finvola

Hello Chris - I have been taking Apixaban for 16 months since diagnosis and have had no problems with it at all. The only dietary restriction I know of is anything containing St John's Wort and the only testing is annually for liver and kidney function.

As yet, the awaited reversal agent isn't available for any of the NOAC's but is expected to be available this year. I have had cuts, dental work and nosebleeds - all without too much of a fuss and don't engage in high risk activities. I understand that in the event of a serious bleed plasma can be used and I always carry a medic alert card and badge in the car.

I hope this is of some help - best wishes whatever you decide.

Chris147 profile image
Chris147 in reply toFinvola

Thank you very reassuring chris

PeterWh profile image
PeterWh

There are loads of comments on other posts. I suggest that you do some searches on key words such as apixaban, warfarin, NOACs, coagulation etc. you could also look in the posts I have responded to by going into my profile.

I think that a llot of GPs and nurses are not happy about coagucheks since they are concerned about people stepping up or stepping down warfarin doses too quickly in response to the reading not being in range. However a number of contributors do self regulate.

Rellim296 profile image
Rellim296

I think there are differences from one area to another with the INR test strips and lancets. Some GPs prescribe 12 a year. My surgery, I gather, would make us buy our own.

G'day Chris,

Mine isn't gonna be a helpful comment really - its basically horses for courses. Now that NOAC's are available if (for whatever reason) warfarin and coaguchek self testing isn't for you, and you need anti coagulation, then push for NOAC's. You got no choice, so whatever works for you just go for it. You can take in all the arguments for and against both forms of anticoagulation but its your call (and your GP's). NOAC's are considerably more expensive than warfarin (at the moment anyway) and if you've got a GP whose budget is strong enough to support NOAC's then go for it. However, must say I think your GP's argument is a nonsense and there are official costings available which illustrate this cost differential. I wouldn't touch a NOAC for 2 reasons - 1) No antidote - yet!; and 2) Warfarin isn't a problem for me. I did have a problem getting my GP's practice to adopt the coaguchek system - so I changed GP's practice. Simples. Now I control my own destiny.

Good luck !

John

PeterWh profile image
PeterWh in reply to

You can see in other posts the pros and the cons of NOACs v Warfarin. I was on Apixaban for 3.5 months but had to swap to warfarin to have an ablation. For me (and many others on here) the issue of no antidote is largely a non-issue because there is much they can do and if a really major bleed you are in trouble even for those not on anticoagulation!!!! You need to assess the risks for you in your circumstances. I did (and my work demands careful risk assessments) and I came to the conclusion that the advantages massively outweighed the risks (and that was before I found out that I had some intolerance to warfarin).

Spiritji profile image
Spiritji

I am on Pradaxa and it seems hassle free without side effects and I can eat whatever I want. Take with a full glass of water they say

I thought it was only initially weekly testing was needed, it is a life saver, saving you from having a stroke, but, I know nothing about the other stuff you mentioned. sorry, but, I also worked for 50years, been retired 2y, but it seems it doesnt entitle you to anything, I paid for a prescription privately recently, and it was double the cost of NHS so I suppose there is a lot of subsidy there. who knows what is fair??

greengo1 profile image
greengo1 in reply to

If you live in the Uk you are definitely entitled to the new NOACs (paid for by the NHS)

in reply togreengo1

Nothing in the Uk is a definite, they are refusing cancer patients certain drugs even!!!

greengo1 profile image
greengo1 in reply to

Sorry, I do not know about cancer, but I do know that AF sufferers are entitled to NOACs on the NHS. That is why a lot of people on this board are on them.

I have worked for over 50 years and I have had no problem being prescribed on to them by my GP after refusing warfarin.

Look at the NICE (National Institute for Health and Care Excellence ) web page it tells you which drugs are approved and available to AF patients on the NHS.

This has been debated numerous times on here which you can see if you trawl back on previous posts

Or a good idea might be to have a discussion with your GP to find out a bit more about "the other stuff" and get guidance to what suits you personally

Some people are happy on warfarin and others on NOACs

My doctor actually guided me onto rivaroxiban which like yourself I knew nothing about

She could have not been more definite !!

Wish you well

PeterWh profile image
PeterWh in reply togreengo1

My suggestion is that where possible you should let your EP Consultant decide which of the NOACs is best for you as an individual as usually they have much more experience than GPs. In my case my GP wanted EP consultant to decide which one. An EP often will have no worries on differential cost (as it is not his budget!!!).

PeterWh profile image
PeterWh in reply toPeterWh

Just thought - if you are unhappy about the recommendations ask why and propose an alternative.

Chris147 profile image
Chris147 in reply togreengo1

Thank you i will do my research.

Chris147 profile image
Chris147 in reply to

Its a lottery it shouldnt be we should be able to receive the same treatment where ever we are Chris

PeterWh profile image
PeterWh in reply toChris147

Don't forget that it is also down to people, their experiences, their preferences, how much they remember and how and how much they keep up to date.

PeterWh profile image
PeterWh in reply to

Yes for most it is only weekly testing although in my case it was twice a week for two weeks because that is the local anticoagulation's policy. Here normally after 6 to 8 weeks you go onto to fortnightly and then by 3 to 4 months monthly. However in my case I am still on weekly after 17 weeks because INR swings back and forth.

Chris147 profile image
Chris147 in reply to

Thank you

I'm on Warfarin and my diet is high in olives, blueberries and peas !!! Pretty well my 3 favourite fruit and veg. No problems at all here, and my INR is fairly stable. I just don't binge on anything.

I've now bought and recently used a coagcheck machine so that if I'm concerned I might be out of range, I can self-test. Just done it and got a good result (2.6), otherwise I was having to wait nearly 2 weeks to have blood taken. I find that amazing as it only takes 5 minutes and every time you go to the GP surgery there's hardly anyone there !!! I'll still go for my normal blood test, just not concerned about it now.

Koll

jeanjeannie50 profile image
jeanjeannie50 in reply to

Koll, just wondering if you have to take a high dose of warfarin because of what you eat?

Jean

in reply tojeanjeannie50

Approx 7.5mg a day. Used to be on 7 till I went tee-total, then had to increase slightly.

K

Chris147 profile image
Chris147 in reply to

I only tske 3 mg every day and 2mg twice a week .which was holding but not with a change of diet

in reply toChris147

I have to take 7+mgs whether I eat peas etc or not Chris.

PeterWh profile image
PeterWh in reply tojeanjeannie50

Pharmacists and anticoagulation nurse told me that even not considering aspects as to how much "green" veg and salad you eat it varies quite considerably from person to person. Everyone absorbs a different amount. Some need 3mg per day others 13mg. At one point I was on 2mg two days a week. Actual dosage is irrelevant. INR is the key.

jeanjeannie50 profile image
jeanjeannie50 in reply toPeterWh

Yes I agree with what you say, but I would rather keep away from foods that decrease my INR and take as few warfarin tablets as possible.

PeterWh profile image
PeterWh in reply tojeanjeannie50

Yes I know where you are coming from. In my case they told me to stop the foods that affect the warfarin / INR levels due to the big sings from one week to the next even though I wasn't eating much and it was regular amounts.

MarkS profile image
MarkS

Chris,

Your doctor's response is very illogical. The cost of dabigatran and apixaban is over £10 for a 10-tab pack. In other words a cost of £400-£800 p.a. (apixaban has to be taken twice daily). Coaguchek strips cost around £2 each - i.e. £100 for testing every week.

Warfarin with testing gives as good if not better results than the NOACs. My diet is not restricted in any way. As Koll, I have blueberries every day, olives and broccoli most days and peas sometimes. I like the reassurance that I am optimally anti-coagulated which I would not get with the NOACs.

Mark

PeterWh profile image
PeterWh in reply toMarkS

Most people would not need to test twice a week. Many once a fortnight or even less often.

MarkS profile image
MarkS in reply toPeterWh

Yes that's what I meant - £2 per strip for 52 weeks = £104 p.a.

gemini52 profile image
gemini52

For me changing to Apixaban from Warfarin was the best thing. Eat and drink what I want and no weekly blood tests. As for no antidote - my consultant said that there are procedures available and anyway the Noacs have a short shelf life thus 2 each day. Warfarin works for some people but it was depressing for me to have such a rigid regime. Whatever makes you happy. Good luck. Patricia.

MarkS profile image
MarkS

Chris,

Your GP's approach is very illogical. Dabigatran and apixaban cost over £10 per 10-tab strip - i.e. £400-£800 p.a. (apixaban has to be taken twice a day). Coaguchek strips cost about £2 each - i.e. £100 for weekly testing.

With self-testing warfarin is as good as if not better than the NOACs.

I have a very varied diet - blueberries every day, olives most, peas from time to time, with lots of other salad and veg and I don't find this a problem.

I like the reassurance of knowing I am optimally anti-coagulated which I get with warfarin but not the NOACs.

Mark

MarkS profile image
MarkS in reply toMarkS

Sorry for the repeat of this post. The system appeared to have lost my previous post as it did not appear for a long time. Is there monitoring?

AnticoagulateNow profile image
AnticoagulateNow

Apixaban for me Chris - no problems at all. No observed side effects and liver/kidney functions were normal at a recent routine blood test (annual). NOACs mean you can get on with your life. Frankly, the effectiveness and ease of use of these new drugs make one wonder how long warfarin will continue to be the 'leading' anti-coagulant. It's cheap of course and then there is our normal reluctance to change.

I know there are variations but for most, the warfarin regime means frequent visits to the clinic, blood tests for INR results where you might be up, down or somewhere in between, frequent dosage changes, daily diet considerations - Oh Matron! It's all so 1950s.

Which of course it is!

PeterWh profile image
PeterWh in reply toAnticoagulateNow

For some NOACs I was told that you need a check after 3 months, then 6 and then 12 and then annual. Check with your pharmacist (they are often best for this type of thing).

AnticoagulateNow profile image
AnticoagulateNow in reply toPeterWh

For me on Apixaban it was a 3 month test after starting the NOAC and if that's ok then annually.

Annekw profile image
Annekw in reply toPeterWh

Apixaban and the like is the way forward ,used widely in Europe with few side effects As it is 12hrly, that's all it takes to be out of the system,whereas Vitamim K takes 24 hrs to work should you need it!

The main question in UK is the price!!!

My Consultant and GP are all for it for my AF!

Offcut profile image
Offcut

I have been on Warfarin since 1992 and I agree the testing is a pain but once it settles with the odd blip now and again I intend to stay on it until I am 70 as the risk of brain bleeds increase from then on. Plus they will have an antidote by then maybe ;) for the NOACs.

Be Well

in reply toOffcut

Offcut -- what is this about a risk of brain bleeds increase at age of 70? I've been on Warfarin for about 12 years & 71 this year. You have got me slightly worried.

Sandra

Offcut profile image
Offcut in reply to

It is like all things it does not mean we will get one at that age but the risk is higher. Sorry if I worried you.

Be Well

greengo1 profile image
greengo1

Same for me as Chris.

On rivaroxiban and no problems whatsoever.

My next appointment to check liver and kidney 9 months after last one

Diet , cuts, an hernia operation and tooth extractions have not been a problem either

Is definitely worth a try for being in control of your lifestyle

Good luck and keep well

Chris147 profile image
Chris147

Thank you all so much taking the time to respond really helpful chris

tennissenior profile image
tennissenior

My Primary won't allow me to have the testing kit even though it would not cost me anything. My insurance plan would pay for it. He wants to be in charge. My INR has been running 2.8. I am very careful about what I eat - and blueberries and green peas are a little high in Vit K. Olives are not so bad. My doctor had once talked about switching me to another blood thinner, but they never came up with a satisfactory antidote, so he wants to kee me on it. I had DVT's twice.

Gaygay45 profile image
Gaygay45

With Warfarin it is not certain foods thar are the issue. I am on Warfarin and have had a stable INR between 2.4 and 2.8. And I eat peas,olives and blueberries regularly. It is a sudden change in diet which causes problems. And then only temporarily. Please just stick to a healthy diet with plenty of fruit and veg and nuts and seeds. Your weight will be steady and you will be helping your BP and your AF to remain under control. Stress is another factor and I have found meditation helps a lot.

I will not be changing to a NOAC until an antidote is available.

By the way I check my own INR but am still in touch withe clinic. It is a great boon to have your own machine and worth every penny of the initial outlay. Testing strips and lancets are on prescription.

7940 profile image
7940

I'm on xeralto and I'm very pleased with it. I haven't had any problems and there are no dietary restrictions .

Therealsue profile image
Therealsue

Chris - it's all been said above, but I'll just add that I swapped from warfarin to rivaroxaban last November and I've had no problems at all. I'm now only taking it as a precaution as I'm now one year post-ablation with no AF. But I think I'll carry on with it.

Chris147 profile image
Chris147 in reply toTherealsue

Thank you i am still weighing up whether to buy a monitor to check it myself or try the new meds will do some more research chris

PeterWh profile image
PeterWh in reply toChris147

Whether or not they will prescribe the strips also partly depends on where you live. Here the doctors all use the local NHS trust anticoagulation service and who take blood samples and have them tested in a lab. When I saw the anticoagulation nurse the first time he explained that they use a CoaguChek (professional) the first time but then take blood and test in a lab since that is less than a third of the cost of the strips. For me I am about 1.5 miles from the local centre (at the old memorial hospital). They have phlebotomists there and every Wednesday morning is only a "Warfarin" clinic (walk-in but you have to be on the list). That works well as no parking charges and it is slightly easier than getting to the GP's!!!

1931 profile image
1931

L have bean on warfarin for 47 years after a valve replacement and now get tested every two months hope this helps Gordon

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