Who takes Warfarin/Coumadin: Just out of... - AF Association

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Who takes Warfarin/Coumadin

jeanjeannie50 profile image

Just out of interest, how many members here still take Warfarin? I do.

Jean

91 Replies

No not any more. Apixaban.

Elephantlydia profile image
Elephantlydia in reply to Coco51

What difference do you find using Apixaban to Warfarin?

Coco51 profile image
Coco51 in reply to Elephantlydia

These things are very personal. My INR was going out of range more than 40% of the time on Warfarin. (In range at least 60% of the time is apparently the aim according to my GP). A lot of things seemed to affect INR with me, antibiotics, foods etc. On Apixaban there are no INR tests, just a yearly blood test. (Means practice nurse who did multiple INR tests is freed up too). I can be a bit more spontaneous with what I eat. And now there's now a reversal agent for Apixaban called Andexanet so that is something less to worry about!

But as I say it's very personal and we all have different needs and priorities.

Not since my cryo ablation in 2008.

jeanjeannie50 profile image
jeanjeannie50 in reply to Jay10

Are you not on any medication now?

Jay10 profile image
Jay10 in reply to jeanjeannie50

Only Felodopine 10mg for BP and I can take Fecainide if I get episode if PAF

BobD profile image
BobDVolunteer

If it aint broke don't change it. 16 years and counting.

Elephantlydia profile image
Elephantlydia in reply to BobD

That is an interesting answer,however do you measure your INR yourself or do you go to your surgery .Most people as you are aware if they have non valvular AF are now put on Rivaroxaban or simpler drugs.The less monitoring required with these newer drugs may improve the quality of life of many people.As Quaility of Life is important for most people I respectfully accept your answer but I beg to differ.

BobD profile image
BobDVolunteer in reply to Elephantlydia

I have better that 85% compliance according to my yellow book which actually makes it better than DOACs. Some years 100%. Whats not to like. I make no attempt to control my diet and the only times I have gone out of range have been due to taking other meds such as antibiotics for example.

Elephantlydia profile image
Elephantlydia in reply to BobD

Superb Bob,compliance can be a problem with all medication.Warfarin is an excellent drug,monitoring is very important.The newer drugs have significant advantages over Warfarin and are increasing used all over the world.The evidence based for DOAC’s give people in my opinion and many others an improved quality of life.

BobD profile image
BobDVolunteer in reply to Elephantlydia

You may well be right there for some but from what we see here bad side effects seem par for the course. With warfarin any side effects seem limited to slight hair loss for a few and brittle nails for a few others. Each to theirown.

Wightbaby profile image
Wightbaby in reply to BobD

Hi Bob. I was the same, but at beginning of very first lockdown I was TOLD I would now be taking Edoxaban from then on....no discussion!I get on OK with it to be fair.......but I don't think I have had a single blood test specifically to see how its going! Hmm?

Gmc54 profile image
Gmc54 in reply to Wightbaby

That is just plain wrong. Some doctors just get way too high handed! I would really kick against it if my surgery tried that on with me. How dare they!!!

Milfordhaven profile image
Milfordhaven in reply to BobD

What a great reply BobD, my thoughts exactly.

TyBryn91 profile image
TyBryn91 in reply to BobD

Same for me Bob, hope you are keeping well.

Same as Bob, 18 years ongoing

I'm often asked by junior docs at the hospital why I'm still on Warfarin. My reply along the lines of ' if it ain't broke why fix it ?!'

Same warfarin 18 years

Rivaroxaban, was put straight on that when i was told i needed anticoagulant on reaching 65.

BobD profile image
BobDVolunteer in reply to meadfoot

And there s me thinking you were still 40!

meadfoot profile image
meadfoot in reply to BobD

Forever 40 in my head Bob, even less on a good day. Its my birthday today so as i am counting backwards these days or reversing the numbers whichever sounds better, so today i am 47. Shhh don't tell anyone lol. Stay well.

BobD profile image
BobDVolunteer in reply to meadfoot

happy birthday.

meadfoot profile image
meadfoot in reply to BobD

Thank you. x

I take warfarin and no desire to change.

Hiya Jean ................... Meeeeeeeeeeee.... 11 plus years now.

😀👍👍👍👍John

patrizia profile image
patrizia in reply to carneuny

I’m still on it 9 years - it’s good for me.

Hi Jean

Me. Since 2010. Like Bob..it ain't broke.

Regards

Amy - Sydney

PS Thank you to all who post here. The advice is invaluable and much appreciated.

🙂

I do, started on it 4 years ago after about 12 months I was put on apixaban but since an AF episode 2 years ago which has left me in permanent AF I was put back on it.

Me for the last 12 years. I keep it well controlled so it's more effective than the DOACs, and costs the NHS a lot less money!

CDreamer profile image
CDreamer in reply to MarkS

so it's more effective than the DOACs, and costs the NHS a lot less money!

I think both those statements are debateable but we won’t go there.

Auriculaire profile image
Auriculaire in reply to CDreamer

I don't think the first one is. The original clinical trials for the DOACs were for comparison with Warfarin with an average time of 65% within range. Indeed there has been some criticism of one of the trials (can't remember which DOAC) because there was suspicion of lack of accuracy with the measurement of INR . If self checking is used and a greater time in range can be achieved then subsequent studies have shown that there is no inferiority of Warfarin in terms of stroke risk, bleeds etc. What is more Warfarin has been around for 50+ years whereas the earliest DOAC (dabigatran) was only authorised by EMA in 2008. Who knows what surprises might be in the pipeline for long term use? I would prefer to be on Warfarin with self checking ( I would even be prepared to buy my own machine and strips) but my GP will not hear of it and is convinced it is an obsolete drug.

carneuny profile image
carneuny in reply to Auriculaire

Hi Auriculaire,See my comments to CD on Dabigitran. Sorry at work now till Sunday so not got any time to check. I have my own testing device, self test and on occasions tweak my doses, either using an Algorithm or adjusting my own intake of green leaf veggies.

I assume you're referring to your GP in France ?

John

Auriculaire profile image
Auriculaire in reply to carneuny

Yes! Here Warfarin ( Coumadine) is hardly used at all. The standard vit K antagonist was Préviscan which I was on briefly in 2015 . It gave me bad leg pain. It is inferior to Warfarin with worse side effects so I don't know why it was favoured. Most people have been changed over to DOACs now. I take Apixaban but don't like it.

carneuny profile image
carneuny in reply to CDreamer

The Australian Government Therapeutic Goods Administration is critical of Dabigitran ( or whatever) as the cause of fatalities. Don't know if it has been updated recently.

Elephantlydia profile image
Elephantlydia in reply to MarkS

It is a myth that DOAC’s are less expensive than Warfarin.Of course the basis price is more expensive than DOAC’s.However have you thought of the “Real Price” of using Warfarin.The actual price of Warfarin plus Monitoring costs.If you go to the Surgery for your monitoring,that is an additional cost for Warfarin being prescribed.Perhaps the N.H.S.could get other patients to be seen instead of your monitoring.Warfarin is an excellent drug,but treatment has progressed,quality of life has improved and may I respectfully say sometimes one has to look at the full picture to get the real cost.

Jalia profile image
Jalia in reply to Elephantlydia

Many of us self test with our own ( self funded) kits doing away with frequent surgery visits

Elephantlydia profile image
Elephantlydia in reply to Jalia

Absolutely,the majority do not.I am pleased that you self monitor.

I self test too.

Excellent,but would you prefer to use one which requires no such monitoring,and has the same results ?

If I could trust it's long term use and lack of side effects, then yes.

I away value your opinion,and change can be difficult,and evidence based medicine is the way forward.I believe there is no Hospital in the U.K which does not accept NOAC’s as an superior treatment.Old Habits are difficult to change, it is sometimes easier to stay still.But we have to sometimes embrace changes which are for the better.Warfarin has someone has pointed out would not have got a license today,aspirin also.Thank you for your question,I hope some of the answers given were helpful and made us all think,and if the quality of life is improved for many people that would be an added bonus.

Warfarin has been used a lot longer than DOACs-50+ years. In post marketing terms DOACs have a bit more than a decade. Who knows what may show up after 20 years of use? If one is happy on Warfarin, with no side effects and a stable INR why change to something that has not stood the test of time because it is newer?

Some of us have no choice but to take warfarin as we have had valve surgery. In my case aortic valve replacement.

I appreciate you unfortunately do not have a choice,the evidence so far is only for non valvular AF.Do you self monitor,it would appear to me to be more convenient.

Yes I do self monitor now. Much more convenient 👍

MarkS profile image
MarkS in reply to Elephantlydia

The basic cost of warfarin is pence. The self monitoring strips are £2 each and I get through about 30 a year. I do one calibration check every year at a cost of about £25. So total cost for warfarin about £90 p.a. DOACs are a lot more expensive than that, and you also need to include kidney and liver test once a year. It's also worth noting that DOACs are not tested for effectiveness because there is no way of doing it outside a complex lab test. Someone at Boehringer Ingelheim, the manufacturers of dabigatran, said there was a need for monitoring to protect patients from severe bleeding - I think they got sacked!

carneuny profile image
carneuny in reply to MarkS

Hi Mark, Now your last sentence rings a bell. It was these bleeds that y

carneuny profile image
carneuny in reply to carneuny

Oooops !It was these bleeds you refer to that was the issue with the Aussies that I referred to with CD in a recent post here. Quite a bit written on it by the Aussie Govt Therapeutic Goods/ Drug Administration.

John

I think NICE have done quite extensive costings on Warfarin v NOACS and regardless of what you factor in Warfarin is still alote cheaper.John

Nice new guidelines recommend that direct acting oral anticoagulants (apixiban etc.)should be considered for AF who have a high or moderate risk of stroke.Warfarin is recommended as an alternative IF direct acting oral anticoagulants are contraindicated,not tolerated or not suitable.This is new guidelines published April 2021.Nice as you are aware look at everything and have come up with this.Warfarin is less expensive on direct cost,home monitoring would make total cost less expensive and if the clinics are monitoring INR and the fact that other people could be seen maybe Nice have taken that into consideration,or perhaps Nice have considered that every AF guidelines world wide preferred choice of anticoagulants is Apixiban etc to prevent stroke in patients with A.F. The reason is because these newer drugs ( Apixiban etc) have an improved/ safety ratio and a predictable anticoagulant effect without the need for routine coagulation monitoring.

When I was diagnosed it was Jan 2010 and it was then that I went on Warfarin. In those days these NOACS were still at development stage. My current GP has already approached me to move off Warfarin - I refused. Same reason as BobD says.John

Thank you for your response and if you are happy so be it.I am glad that your G.P. is up to date with the evidence base,it makes me pleased that you have an excellent G.P.

I went on Warfarin around the same time as you John, but I was young and clueless about why I was taking them back then and would take myself off as and when I thought I should. Crazy when I think back now. I can only thank goodness that I found this site which helped me understand all about AF.

Hiya Jean, I didn't treat Warfarin like a tap, on/off/on as you describe.I did have it very well explained to me and a very supportive GP in Dorking, Surrey. However I did regard myself as supremely fit and when told it was AF by the consultant I started laughing.. The consultant firmly put me in my place.

Like you, I am eternally grateful for this website and for two contributors, BobD and MarkS, who in different ways have taught me so much. Not just about AF but giving me a different way of thinking about caring for one's own health - if you see what I mean .

John

I think part of it is down to where you live. My brother is on warfarin and has been since his last ablation in 2013 and very happy. He lives in England (Surrey).

When I was diagnosed in 2019 I was put straight on Apixaban. I was working in our major hospital here in Wales (Cardiff). The young doctor (aren't they all!) told me that if Warfarin was developed now it would never get a license.

I'm glad I don't have the faff of lots of blood tests apart from the annual one and I can eat all the broccoli I want!

Possibly the same attitude as my pharmacist when I said I was changing from Warfarin to Xarelto - he said 'I wouldn't take that rat poison either' !!!!!!

Thomas45 profile image
Thomas45 in reply to Sewnknit

I can eat as much broccoli as I want and I take Warfarin. It's a myth about green vegetables. You just adjust the dose.

Gmc54 profile image
Gmc54 in reply to Thomas45

Absolutel. I have a huge salad every day, and also eat greens like brocolli etc. It's about consistency, roughly eating the same things week by week.

carneuny profile image
carneuny in reply to Gmc54

Agree totally, but I also drink whatever I want, including alcohol. I do that consistently too 🙂

carneuny profile image
carneuny in reply to Sewnknit

Yes Sewnknit - they are all young now ......... and thats the problem when they make bland statements like that. If he'd been talking to me I'd have simply said ........... "well, NICE could always have it withdrawn on the grounds that it is no longer efficient compared to NOAC's !

another case I'm afraid of youth is wasted on the young.

John

Never used it, never will.

Yes me too Jean.

When I first had AF I was on Warfarin. Then it was stopped for probably 10 years. They started me back on Warfarin after they started on my series of ablations.

Very steady INR.

I also survived severing the artery in my hand when I had a fall with a bottle in my hand (I was not inebriated).

Then there was the day I fell off a ladder.

They just have to be mindful in A& E.

I continue to take Warfarin and so far no talk of changing me to the more modern anticoagulants.

Pete

Hello Jeanjeannie, I still take warfarin, have taken it for approx 18 years

A long lurker here but I have taken it from 2012 and self test.

Hello it’s hatten again, after reading the previous comments, I must add that my INR readings are nearly all within range of 2.2 up to 2.9 I eat broccoli on a regular basis and am not a faddy eater, my readings are only interrupted when taking antibiotics , I take a lot of medication for other ailments it so far so good.

I have been on warfarin for 15 years without any real problems and my INR has been well controlled with 2 monthly tests. I've avoided Apaxiban or the other one as I had a friend who bled to death 4years ago because there was no antidote.

That's sad to hear about your friend.

My AF nurse said she wasn't keen on the NOAC's when they first came out and still thought Warfarin the best anticoagulant, but has gradually warmed to Apixaban. I may change my mind at some stage, but will just keep a watch on the reports on this forum from people who take them and see how they get on. It's the unknown long term use that makes me hesitate.

I'm still on Warfarin Jean

Me but that's because 6 months ago my aortic valve was replaced with a mechanical one and warfarin is still the only anti coagulant licensed for this application. Apparently there are trials going on in the US with apixaban etc and mechanical heart valves but its is likely to be a couple of years yet. Adjusting to life on warfarin has had its challenges but you just have to go with it.

For years I took only an aspirin. Then the group running the medical practice changed and all arrythmia patients reviewed by the brilliant GP Dr. Matt Fay

I was put in Warfarin but couldn't get into range consistently, so put on Rivaroxaban. On taking it I immediately had pains throughout my body, except for my head. I was taken off Rivaroxaban after 12 days. Dr Fay offered to prescribe what I wanted. I decided to buy an INR meter a.nd go back to Warfarin so I could see what affected my INR. I do now manage to keep in range. My meter is checked against medical centre's meter usually once a year.

I believe that Rivaroxaban was the straw that broke the camel's back. When I stopped Rivaroxaban the pains did not subside. After 5 weeks of tests I was found to have an auto-immune condition called Polymyalgia Rheumatica. It took nearly 4 years to get rid of PMR.

My arrythmia nurse emails every 8 weeks for my reading. I test myself and send an email back.

I consider Warfarin to be tried and tested, over nearly 70 years. The new ones have a relatively short track record.

I should add that I've had one operation under general anesthesia while taking Warfarin for a dodgy appendix. I was diagnosed by an out of hours doctor told to go home and report to a specific ward in the hospital. I arrived at 2.30pm and was put on intravenous vitamin K and antibiotics. Late at night I was told my operation would be "in the morning". Fancied a good long sleep but at 2.30am on a Sunday I was wheeled into the operating theatre.

A few points. First and most importantly, why switch, or even ask about switching if one is completely satisfied with warfarin? Secondly "... Dabigatran only authorized for use since 2008..." most would consider 15 years a reasonable time.

Finally, this only one case, so it may not me common, and I am totally mystified by the American drug/medical system (every time an Mericsn tried to explain it to me, I start drooling and me eyes roll back in my head) but in a nutshell, he said he would love something he didn't have to monitor, but warfarin "was all he could afford with my drug plan".

The other downside he tells me, is that because he lives an hour from the nearest hospital...and no helicopters, dirt roads, sometimes impassible due to floods/blizzards...he is a rancher, his wife worries constantly about himself bleeding out while fixing fence. So I guess sometimes ones livelyhood can have a bearing on which thinner is a best fit.

Keeping in mind he is one of the few Ive heard say "put me on the newer stuff" most, from what I've seen here, are quite happy and content with warfarin...and also keep in mind I'm "new to the game".

Game...game? Did I mention "HARRY!!!" Sorry sorry sorry...it's my other affliction *sigh* 😋

CDreamer profile image
CDreamer in reply to beach_bum

Cost, thankfully,is not an issue in UK for us personally as there is a flat rate prescription charge whatever drug you have prescribed and many people over a certain age or with chronic conditions will not pay for their drugs.

As a matter of interest, if you live off main grid - do you keep a store of Wafarin antidote? I ask because I don’t think it would matter which anticoagulant you took if you had a significant internal bleed and couldn’t access emergency care within the Golden Hour as the VitK antidote does take some time to take affect I believe.

beach_bum profile image
beach_bum in reply to CDreamer

CDreamer, I have no idea, he lives in the USA, me Canada...totally different health care systems. I also do not pay for drugs, and was not asked with thinner I would like *like I would know lol* I was just handed a script, after answering the usual list of health/interaction questions. off to the pharmacy and picked up my drugs...after another lengthy instructions, cautions, and printed detailed instructions 😜

He does live off grid on his 650 acre ranch, but has a pretty stable system of solar. wind, and backup generator, so I would assume he has that part covered.

He is not too concerned about internal bleeding, but his wife is concerned about him cutting himself badly as any rancher/farmer will tell you is a very real daily threat.

To be clear, he wants to go on a less risky anticoagulant, but it would cost him another $350.00 USD per month, and that, on top of his wifes' meds, is not an option.

Different country different system, and according to him, not always the best for self employed retirees. He is always always going on about the "drug cartels" and he is not talking about illegal drug traffickers.

😑

It’s clear that we all have our preferences and bias.

I agree that Dabigatran, because it was the 1st DOAC to come onto the market and they got the dosage incorrect, led to some deaths because of bleeds but that was some years ago now. All the later research I have read show that DOACs, Apixaban in particular has a lower brain bleed risk of any anticoagulant and as I have no known side effects, I did with Dabigatran - acid reflux - and for that reason alone I’m sticking with Apixaban!

Just because a drug has been around for a number of years doesn’t mean it is safer, more familiar certainly.

It seems to be a matter of preference and individual experience and as long as we are able to have what suits us personally, I don’t see that there is an issue.

I do - been on it for approximately 40 years

Those of us with mechanical valve replacements currently have no other options that I'm aware of. Only Warfarin is licenced for that use. My INR (range 3.0 - 4.0) is quite stable, I've recently become aware of the risk of calcification with long-term Warfarin use - have since been taking a Vitamin K2 MK7 supplement (200mcg/day) to hopefully counteract that.

Yes I still take it. 35 years now 👍

5+ years now since afib started,,,,,no issues,,,,I home test every 2 weeks,,,,eat the same foods,,,don’t go nuts with the salads intake,,,,staying in range easy for me,,,,so why change? Maybe my hair is a bit dry at this age of 74 but maybe it’s not the warfarin,,,,I would change if I had a problem,,,,

I've been taking it for 9 years, I was told here in Italy that I couldn't take the DOACbecause my problems are valvular this may have changed in the last few years. I followed the diet advise for the first few years but after following things on here decided to eat normally, I now feel quite happy to take Warfarin which is just once a day and not always at the same time! Keeping in range isn't a big problem as I now know that change of season and holidays etc are going to affect the INR .

Yes, I have a fairly normal diet too. I never give much thought to the fact that I take Warfarin.

carneuny profile image
carneuny in reply to paolina

Hi paolina,

Your last sentence is interesting - all my past trips to Australia (Sydney and Melbourne) from Heathrow for holidays, have all led to an increase in my INR - no exceptions. And all its been is a 21 hour flight - weird. Have never let it worry me or disturb my holiday, just adjust the dose myself. Then when I return to UK the reverse occurs, except that I don't tamper with the dose on my return and my INR adjusts itself. To be honest there is nothing about Warfarin the worries or frightens me.

John

I do. I chose due to the cost and it’s been around for years. I been taking it since I was diagnosed with paroxysmal AF Been taking it for 4 years now and plan to keep taking it

Not since June last year. Couldn’t stay in range on Warfarin. On Apixiban but losing lot of hair and that concerns me. Otherwise no problem

Warfarin for me over the last 3 years with a fairly stable INR reading being maintained .... Prior to my TIA I had been on a low fat diet since being diagnosed with gallbladder disease around 2010 and I would be interested to hear if others have managed the restrictions of a gallstone low fat diet. For me, all was hunky dory with lots of salad and green stuff in diet until 2018 when I experienced a TIA and then had to rethink. I still have salads etc but with more measured portions and big reductions in spinach / kale / broccoli etc. Porridge, fruit (blueberries) and fat free or low fat yoghurts now play a big part at breakfast time. Just as a matter of interest to anyone interested, a grated apple is often included and stirred into the porridge, as since the TIA hard pieces of apple tend to stick in my throat and don't swallow down easily presenting a choking hazard in my experience. I appreciate that I am side tracking a bit from the original question and don't wish to bore you with dietary issues but would say that I have had a bit of a blip with INR Readings since making a few changes to diet and this has resulted in my consistent daily 4mg (weekly 28mg) dosage of Warfarin being increased to 5mg on four days a week with 4mg on other three days (weekly now 32mg). Not sure if this is considered a low, normal, average or high dosage and would be interested in hearing what others take ....

Sent from my iPad

jeanjeannie50 profile image
jeanjeannie50 in reply to AFHenz

I'm having my gallbladder removed on 27th July. Are you saying you cured yours just by cutting out fat? I've done that too over the last 5 months, but when I asked my doc this week whether I should go ahead with the procedure, he said because my last attack in January was so severe I should.

Jean

AFHenz profile image
AFHenz in reply to jeanjeannie50

Not saying cured as I am always conscious of what I eat but cut out most saturated fat. I am quite strict with myself and enter daily food details into the MyNetDiary App which has enabled me to watch daily calories and protein/carbs/fat intake. No cheese as such which I used to love no butter or bacon egg ( though I have found a couple offices of water thin Parma /prosciutto

AFHenz profile image
AFHenz in reply to jeanjeannie50

Sorry Jeanjeannie50 trying to correct the dreaded predictive text errors and hit the send button accidentaly. (Offices should have read of slices) I have had a couple of really bad attacks since 2010 including one which caused jaundice but I am convinced that was caused by medication for vertigo type dizziness. I am not a regular Doctor visitor or tablet taker unless absolutely necessary (TIA/AFib). The changes to diet resulted in me dropping just over 4 stone which was a bonus as I now tend to be stable at a few pounds over or under 12 stone. Good Luck with your operation

jeanjeannie50 profile image
jeanjeannie50 in reply to AFHenz

Thank you. My last attack was dreadful and floored me for a few weeks. I really can't go through that again and my daughter says she never wants to see me so ill again. I've lost a stone in weight since cutting out fat, so am now at my ideal weight.

Jean

I do

Hi Jean, I have taken Warfarin for about ten years, personally I have no trouble with it, my INR remains pretty stable, so I wouldn’t want to change at all. A few of my friends have changed to the newer Anticoagulants, some because there are fewer tests needed, I personally have a check every three weeks or so. I’m perfecting satisfied with Warfarin……….

I still take it

I do. Xx

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