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Higher Incidence of Ischemic Stroke in Patients Taking NOACs

MarkS profile image
84 Replies

There's a new study out that has found that NOACs have a 29% higher risk of ischaemic stoke than warfarin:

medscape.com/viewarticle/90...

Apparently apixaban and dabigatran have statistically significant increased risk whereas edoxaban and rivaroxaban have increased risk but this is not significant.

However there is a lower incidence of intracranial haemorrhages and nontraumatic haemorrhages in general among patients taking NOACs.

Remarkably these results were from US hospitals where the quality of INR control is not good. With good INR control, the number of haemorrhages on warfarin is considerably reduced. There is an interesting discussion on these results on page 4.

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84 Replies
BobD profile image
BobDVolunteer

You would have to prise my warfarin from my dead hand.

Auriculaire profile image
Auriculaire in reply to BobD

The advantage with Warfarin is that it has been used for so long so the long term consequences of taking it are known. And with a drug you can be on for life, long term can mean 30 years plus. None of the NOACS have been used for that long. Who knows what the long term consequences of interrupting the clotting process in the manner they do might have for other systems in the body.

faridaro profile image
faridaro in reply to BobD

I was just prescribed Eliquis (apixaban) however it is quite expensive here in the US and now I am trying to figure out cons and pros of apixaban and warfarin as I don't want to spend our hard earned money on an inferior drug.

I am 67 and have been having afib for the past few years but only recently diagnosed as it became more frequent. Now it occurs almost every night usually after a meal which may indicate vagal origin although I think it was triggered by stress a few years ago when our adult son with Down Syndrome became severely ill and eventually was diagnosed with Lyme with which still has some issues.

I've been on Flecainide 150mg/day for the past 2 months but it doesn't seem to be very effective, so I saw EP who suggested ablation for which I'll obviously need to be anticoagulated. When prescribed Flecainide I was resisting anticoagulating meds because of severe bleeding last year after a tooth extraction. However, after being tested for clotting factors I was cleared by the hematologist to use anticoagulant and now have a dilemma which one?

Would very much appreciate your experience with warfarin - how burdensome is maintaining INR and any side effects of medication?

BobD profile image
BobDVolunteer in reply to faridaro

Hard to say as we are all different. I am pretty lucky I think in that I am in range at least 85% of the time if not better but some people find this impossible and for those the alternative DOACs are a godsend.

faridaro profile image
faridaro in reply to BobD

Thank you "Doctor" Bob!

MarkS profile image
MarkS in reply to faridaro

Like Bob, I find warfarin easy to maintain in range. I would suggest that you may need to be on anticoagulant for life, so if you go for warfarin it might be worth investing in a Coaguchek or similar monitor. Then you can ensure you are in charge of your anticoagulation rather than v.v.

faridaro profile image
faridaro in reply to MarkS

Appreciate your opinion Mark as I am to call my cardiologist to ask for warfarin and need as much help as I can get to make my point. And it would be more cost efficient to invest in Coaguchek instead of paying $190/month for apixaban.

in reply to faridaro

I did my own for years.I wrote how it worked below. Hope it helps. irina

in reply to faridaro

Check for your PM. 😊 irina

genorm profile image
genorm

Now I am thrown :-(. A new cardiologist to me has said as I am in my 65th year, we need to seriously consider anti-coagulation. Previous specialists have been of the 'no, bleeding is a more serious risk for you, under 65!'. So I have done my research about the new noacs, read heaps here, watched the excellent Sanjay Gupta.... and made my decision. Until reading this, that is. Should I be worried again now?

in reply to genorm

Yes, my thoughts also

in reply to genorm

There are arguments to be made for both sides-warfarin and NOACs. The important thing is after researching decide what you believe is best for YOU and don't let the doctor talk you out of what you feel is right. Sometimes it's hard to stick to your guns with doctors but worth it and you can do it. Take care. irina

fibber-me profile image
fibber-me

Warfarin is exact and data-driven leading to less errors. But take into account many patients who typically get strokes from life-choices, may not understand how to monitor or the importance of monitoring their blood levels. Therefore, doctors just throw the newer anticoagulants their way assuming easier is better for compliance (in my opinion). I wish my doctor had prescribed Warfarin. I am insulted that he did not because they assume patients are too irresponsible regarding their own health or prefer what appears easier. I am scientific and respect data. I have ordered my own anticoagulant testing kit even though I have been given a newer anticoagulant.

baba profile image
baba in reply to fibber-me

What will you be testing with your new kit?

fibber-me profile image
fibber-me in reply to baba

The specific blood test is called a prothrombin time test. The prothrombin time is the amount of time needed for a small amount of blood to clot. So I wanted to figure out what my clotting time is; so I ordered a INR test meter (portable, battery-operated meter, it’s used to monitor response to warfarin - I am on a new anticoagulant-but just need the data). INR target range is set by the doctor. It is typically between 2.0 and 3.0 for basic blood-thinning needs, BUT! the range may be slightly different based on a person’s individual issues.

baba profile image
baba in reply to fibber-me

INR is ONLY relevant if you are on warfarin.

fibber-me profile image
fibber-me in reply to baba

Oh wow! Thanks!!!!

Auriculaire profile image
Auriculaire in reply to baba

There is a way of monitoring Pradaxa but it is a very obscure ( and likely expensive) blood test that many smaller hospitals just don't do. There was a controversy about this in the BMJ involving internal emails at Bohringer Engelheim as a scientist there had suggested that monitoring would make Pradaxa much safer but the company wished to push the " no need to monitor like Warfarin" advantage.

in reply to Auriculaire

Marketing is King!

AnneWorner profile image
AnneWorner in reply to baba

That's true, but I would love to know what a person's protime is on these new drugs.

secondtry profile image
secondtry in reply to fibber-me

I follow your logic and I, also just reached 65, asked my GP about this but it was dismissed quickly as only relevant if on warfarin - however didn't get a full explanation and I have become wary of that type of reaction from medics.

BobD profile image
BobDVolunteer in reply to fibber-me

The factorX antagonists do not work in that way so your tests will fail.

in reply to fibber-me

Just a thought.Not prescribing warfarin with its attendant testing and prescribing dosage changes absolves doctors of a lot of legal responsibilities related to your anticoagulant therapy. I can't blame doctors for trying to keep an eye out for themselves while taking care of patients. Especially here in the US where malpractice suits are a dime a dozen and often frivolous. Malpractice insurance rates are sky high here-especially for Obstetricians and Anesthesiologists.

When NOAC's/DOAC's cause an incident the legal burden can more easily be shifted to the drug manufacturer.

Many patients aren't clear about their options so an easier route is taken by the physician without giving patients all the info they need to make an informed choice. Be sure the choice you make is best for you not the doctor.

I personally want to have as much input into my care as possible and choices benefit my health rather than a caregiver's convenience.

wilsond profile image
wilsond

Thank you for sharing,but I could just sit and cry!.I just don't know what t o think any more.I feel with my family history of stroke and AFib etc it's just a matter of time...

I have booked a private appointment with my EP tomorrow as I already have questions about my proposed double ablation,shall add another on this subject to my lengthy list!

meadfoot profile image
meadfoot in reply to wilsond

Yes ask your EP there has been a couple of posts this last few days about NOACs or DOACs as they now seem to be called. Pros and cons for all meds all we can do is ask relevant medics, do our own research and make a decision with as much information as we can muster. Many people swear by warfarin and others by DOACs. It's all a balancing act. Personally I take a DOAC have done for five years, who knows if I have made the right decision. Best wishes.

wilsond profile image
wilsond in reply to meadfoot

I will do and share response! Have a notebook ready with 12 questions and space for answers,taking my husband with me..ex copper ,good at listening carefully.It is costing him a days pay..as a certain security firm with the number 4 in it is rubbish in terms of staff care...however I digress....

Will post !!

Thank you

in reply to wilsond

For me taking and managing my own warfarin gave me a great sense of security.

Before I managed to get myself on warfarin I was briefly (in early AF days) prescribed Pradaxa. Aside from the horrible gastrointestinal symptoms that occurred on a daily basis I tripped on a broken sidewalk one night walking my dog. A rock made a small cut over my eyebrow and what should have been a small cut I could clean and manage at home turned into a whole lot of bleeding with a trip by ambulance to the ER and stitches.

I got my warfarin!

dedeottie profile image
dedeottie

I think I will reserve judgement until results of more research are available. I agree that it is worrying especially since I was on warfarin and self testing so keeping my INR in high 2s. However this was not an easy task as my system metabolyses warfarin quickly and I was constNtly on alert for potential problems with food. I was put on apixaban following my near disasterous ablation when I had to have vitimin k administered quickly to reverse myINR. He then wanted me to be quickly anticoagulated so apixaban seemed the best option and I have stayed on it. I would be devastated to have to go back to warfarin as my quality of life is vastly different without constantly thinking about being adequately covered but obviously I would if it was absolutely proved to be the safest option re ischemic stroke.

So thanks for posting this and I wait with baited breath for more conclusive scientific research. X

Thanks Mark....my feelings the same as Bob . I'm happy to stay with warfarin and self test.

EagleOwl profile image
EagleOwl

I use garlic, onions and omega three: Flax, cod liver, K2 etc., to help thin the blood. Also healthy diet and exercise. Is it not possible to test fluidity of blood before taking blood thinners?

fibber-me profile image
fibber-me in reply to EagleOwl

D-Dimer can show clots but yes there are tests for that- was a discussion here months ago.

secondtry profile image
secondtry in reply to fibber-me

Yes, I have had a D-Dimer a couple of times in hospital with a suspected clot. That test is however not conclusive, last time I was around 500 the threshold for a clot and the medics said 'it would need to be around 1000 to confirm a clot'. Does any one know if you can request a DD as an annual check at your GP surgery to see what your normal level is?

Auriculaire profile image
Auriculaire in reply to EagleOwl

I was given a test before having my bowel op . I think it was prothrombin time plus something else but this is France and it was in a private clinic.

momist profile image
momist in reply to EagleOwl

EagleOwl it actually has nothing whatsoever to do with the 'fluidity' of the blood, and the term "blood thinners" is inaccurate shorthand slang for anti-coagulant drugs. The coagulation of your blood is a complex process, and the various drugs interfere with the process in different ways, hence the warfarin needing INR checks as factor K goes up and down with variation in your diet. The NOACs or DOACs work differently in a different part of the clotting process, and INR is irrelevant. I do wish people did not use the "blood thinners" term at all.

in reply to EagleOwl

I used foods a lot also and still do. Also I love Indian food and turmeric, cinnamon, and cumin are good spices to help keep blood healthy. In fact if you're on an anticoagulant they advise being careful about consumption. But they work opposite of leafy greens which can lower INR;s. Worth reading about.

Also there are 2 types of cinnamon: 'True' cinnamon and cassia which is very like cinnamon and usually what is sold as cinnamon in the market. If you are on anticoagulants and like cinnamon it's worth reading about the difference between the two as they have vastly different amounts of curcumin which is the ingredient in these spices that affect clotting times.

Finvola profile image
Finvola

I like to see actual figures as 29% increased stroke risk sounds awful.

The numbers themselves look less daunting for ischemic stroke -

out of 67262 NOAC patients, 3812 had strokes - 5.66% of group

out of 59066 Warfarin patients, 2626 had strokes - 4.44% of group

Increased risk is therefore 29% for NOAC group - compared with Warfarin group.

For those of us who fear brain bleeds, NOAC’s score better than Warfarin and also led to less severe strokes than Warfarin.

New drugs, new issues and the only thing we can do is be informed, trust our physicians and decide on risk/benefit.

Interesting that there have been a few threads recently about members being shifted from Apixaban to Edoxaban - we assumed it was for financial reasons but . . .?

Thank you for drawing attention to this Mark.

Auriculaire profile image
Auriculaire in reply to Finvola

They have used relative risk . Always looks more dramatic.

Finvola profile image
Finvola in reply to Auriculaire

Agreed - which is why I always dig out the actual figures and try to look at them in the larger picture.

in reply to Auriculaire

Don't you just love terms like 'relative risks'? Relative to what? Watermelons?

momist profile image
momist in reply to Finvola

Personally, I've witnessed the outcome of a subdural haematoma in my father in law, and I would not wish that on anyone. He took over a year to die, and spent all that time slowly deteriorating in hospital despite all 'best efforts' including four separate brain surgeries. Even a stroke would be preferable to that.

As we get older, the brain shrinks slightly, and the blood vessels supplying the brain from the lining of the skull get stretched and more vulnerable. Any bang to the head is more likely to cause bleeding the older you are. At age 69 I'll stick with the Apixaban, thank you.

Buffafly profile image
Buffafly

And a very Merry Christmas to you too!

Auriclaire posted some interesting stats in a discussion re anticoagulation earlier. Being alive is dangerous and you can go mad trying to live a 'safe' life, not to mention your time would be better spent trying to make the world a safer and better place for others or at least eating, drinking and being merry.

Happy New Year too, though we're all doomed, doomed.....

fibber-me profile image
fibber-me in reply to Buffafly

Buffafly!!! Wonderful post that made me smile and made me remember to be the best human I can be! What great advice you just gave!! And .. boy... does the world need this attitude now!!!

wilsond profile image
wilsond in reply to fibber-me

Never mind the world! It a small island off Europe thatworries me lol!

F-M-C-MM profile image
F-M-C-MM in reply to wilsond

Which one? There are 2 islands off Europe!

Finvola profile image
Finvola in reply to F-M-C-MM

And believe me, the other one is even dafter - or one part of it anyway.

CDreamer profile image
CDreamer in reply to Finvola

Having just returned from the fair city - I agree! But very lovely.

Finvola profile image
Finvola in reply to CDreamer

Wonderful city, CD. The thing is that the whole island is incredibly beautiful and the people are talented and welcoming. The vocal minority shouting from the seventeenth century gets too much attention unfortunately.

in reply to Finvola

What are they? Can you PM?

wilsond profile image
wilsond in reply to F-M-C-MM

True!yes I meant ,selfishly,the o n e I live on.....but we could also include all of them,Isle of Man,Wight,the Channel Isles,Hebrides....☺

in reply to wilsond

Got it! Should have continued reading before posting.

in reply to wilsond

Right now the US worries me. LOL I live here.

Given the impressive background of the contributors, and the findings, this large retrospective study could prove to be a significant step towards reconsidering the rapid move towards DOACs. Until there is a reliable test comparable to the INR, I imagine most patients who can self manage their warfarin, will continue to resist being switched.

I’m looking forward to reading independent and expert review of the study.

Thanks MarkS

doodle68 profile image
doodle68

Having read the whole article it touches on something that was mentioned in the ''The 2018 European Heart Rhythm Association Practical Guide on the Use of NOACS in Patients with Atrial Fibrillation''

.....and that is the importance of a patient taking NOACS strictly in accordance with their prescription.

If we consider the half-life of Apixaban and Dabigatran where a twice-daily dose is require in comparison to Warfarin which has a longer half-life/once a day dose, the twice-daily dose may mean there is a greater chance of a dose being missed and consequently, a patient not being anticoagulated. Obviously for every dose missed there is an increased risk

I think edoxaban and rivaroxaban have a longer half-life (but not as long as Warfarin) and a once a day dose which might account for the slight difference risk between the two lots of NOACS mentioned in Marks post.

It is so difficult making an informed decision on a choice of medication when we get so many studies with conflicting results. I am happy with Apixaban and am rigorous about taking it on time.

Finvola profile image
Finvola in reply to doodle68

Good point doodle.

CDreamer profile image
CDreamer in reply to doodle68

My thoughts exactly! However, getting my husband to stick to the 12 hour rule on Pradaxa is a battle. A few hours here and there in his mind makes no difference - whereas I think it could.

in reply to CDreamer

I agree. A few hours here and there means a few hours not covered. I have family members who I will never convince that missing doses more often than once in a blue moon is dangerous.

Hambo444 profile image
Hambo444

I am on waiting list for ablation. As such they have left me on apixiban. I am 46 with no stroke risk so keep wondering why do I need to take these for perhaps up to a year while on waiting list.

BobD profile image
BobDVolunteer in reply to Hambo444

Because ablation process can cause clots otherwise. If not anticoagulated then you may miss your slot when it arrives as need to be so for at least three months prior.

Hambo444 profile image
Hambo444 in reply to BobD

Oh is it 3 months? Thought it might have been 1 like the cardioversion. Thanks Bob! Thought I would get 1 month notice you see buy yeah perhaps not 3.

BobD profile image
BobDVolunteer in reply to Hambo444

Well all mine were three.

Bagrat profile image
Bagrat

I read this article yesterday. I have a habit of falling over and feel that in the light of that, I'll stick with apixaban. I do agree that it is difficult to get accurate data re compliance with shorter acting DOACs. Unfortunately honesty is not always top of people's lists. In any case they may forget they've forgotten.

Of course I would say this as reluctant to return to warfarin .OH is on it still and fine. He does not self test

DK81 profile image
DK81

"There's a new study out that has found that NOACs have a 29% higher risk of ischaemic stoke than warfarin." Fair enough, but is this study any better than other studies that lead or have led to different results?

MarkS profile image
MarkS in reply to DK81

This study used actual real world data and was run by doctors with no financial conflicts. The NOAC trials run by the drugs companies. The time in therapeutic range for warfarin in the trials was relatively poor and they did not use modern methods on monitoring INR. They also ensured the patients took their drugs precisely as prescribed and in the real world that doesn't happen.

faridaro profile image
faridaro in reply to DK81

Mark is so right pointing out that NOAC trials were run by the drug companies and unfortunately there is a big conflict of interest.

If you look into ARISTOTLE trial study on apixaban conducted in China, you'll find out that "The ARISTOTLE (apixaban) trial had irregularities. An analysis of publicly available documents describe FDA inspections of clinical sites in which significant evidence of objectionable practices reported seven official-action-indicated (OAI) events for the ARISTOTLE trial. OAI events represent the most severe classification of FDA inspections. In this case, events included falsification of data and inaccurate adverse event reporting. One study site in China altered patient records and if data from that site were removed, the mortality benefit in the overall trial was no longer statistically significant."

So, this is a big red flag for me.

DK81 profile image
DK81 in reply to faridaro

I appreciate having your comments, but I am confused about their significance, and did not understand MarkS's comments (above) either. I am looking for a clear conclusion concerning the different drugs, if this approach to the matter is not asking too much! Maybe I need to read the original report.

MarkS profile image
MarkS in reply to DK81

OK I'll try to be brief. The NOACs from their trials were originally touted as having superior performance to warfarin. This study shows that in the real world they are not as good as warfarin. This may be partly due to the lack of monitoring with the NOACs and patients consequently not taking the tablets when they should.

The conclusion in the report is that if you can maintain a reasonable time in the right INR range on warfarin, then stick with it. NOACs are really only suitable for those who do not have a steady INR.

DK81 profile image
DK81 in reply to MarkS

Thank you for clarifying the report's conclusions. I think a 29% increased risk of ischaemic stroke is quite small, especially when compared with the risk of a stroke with no medication whatsoever, and also the increased bleeding risk with warfarin. So I am not minded to try to change from Apixaban to warfarin. (I am recovering from a stroke.) If the possible new treatment for AFib (see latest post) becomes a reality, much of the current discussion may be redundant in the future. In conclusion, a dream I have is that someone will invent a method of detecting clot formation within the heart - probably a pipe dream!

MarkS profile image
MarkS

Many thanks for all your replies, there have been some good points from Bob, Doodle68, Oyster and others. My take is that the difference between NOACs and warfarin is down to monitoring in the real world.

Warfarin is carefully monitored by anticoagulant nurses, pharmacists, etc. That means patients tend to be more diligent on taking their tablets.

With the NOACs, there is no such monitoring - indeed the lack of monitoring was seen as a plus point, the patient can be sent away and forgotten about.

I, like many people I guess, need the spur of someone checking up on me. I also self monitor and self manage, so I can see exactly what warfarin is doing to me and make adjustments. With NOACs you just have to trust it's working and no one checks up on you, so a lot of people become a bit lackadaisical. And that's particularly bad news with an NOAC because of their short half lives. With warfarin if you forget a dose it doesn't really matter.

I think the vital news from this study is that if you are on NOACs, in particular, it is really important to take them religiously. If you do that then you're going to be well protected. Having said that, if you're on warfarin and have a Time in Therapeutic Range or more than 70%, then you are most probably better off staying with warfarin (and saving the NHS a shedload of money!).

DK81 profile image
DK81 in reply to MarkS

Just out of interest my GP warned me today not to miss taking any Apixaban tablets!

in reply to MarkS

Very well put Mark. Maybe knowing which drug to choose should include knowing ourselves and how compliant we are with our healthcare. Thanks, irina

brit1 profile image
brit1

I am very scared of being on these drugs (on Eliquis and Metoprolol). Haven't had an episode for a year thank God. I am taking half the recommended dose of Eliquis (so am taking 2 1/2mg bid) as my diet is mostly raw vegan and includes fish oil/ garlic etc. I also wish there was a test to determine how well NOACs are working. I am 80 but no kidney issues and weigh 148lbs (I am tall). I know 2.5mgs bid is recommended for over 80 with kidney problems and under 135lbs but as I weigh more and don't have kidney issues apparently dose doesn't apply to me but for now is what I am doing.

Wow. Thanks Mark. Very useful info. I no longer take anticoagulants for AF as I had a Watchman device inserted last January.

But prior to that I was on warfarin since 2011. I did my own testing and managed my own dosage adjustments. In the last few years of self-testing I tested weekly and was able to keep my INR's very stable and within range.

In my opinion the best way to take warfarin in a safe and well-controlled way is do it yourself. This might not be feasible for everyone but I suggest giving it a try if you can.

I asked to take over my own coumadin management (I'm a former nurse) because insurance wouldn't continue to pay for more frequent testing than monthly. But if I did my own they would loan me the meter and cover my supplies. I was lucky to have a doctor who supported me and helped me with coumadin clinic nurse skirmishes when my dosage didn't agree with their algorhythms. I did have to call in my weekly INR's to them along with any dosage adjustments.

I felt very safe managing my own coumadin this way and never had any problems. I went through several surgeries, dental procedures all while on coumadin and never had a bleeding problem. I believe in many instances patients do better managing their own care as they know their bodies better than a nurse at the other end of the phone. Most of the nurses I phoned results to were competent and caring but on the odd occasion when I got one who was filling in and didn't have a lot of experience with coumadin I was happy my anticoagulant care was not in her hands.

With frequent testing and a supportive doctor I feel warfarin is safer than the alternatives. Our INR'sPT's/PTT's spend too much time unknown in the 'cloud'and we have no idea what our bleeding risks are. IMO opinion warfarin-managed correctly- helps us keep tight control over our bleeding risks. Yes there are risks and it can be a harsh drug but it has been around long enough to know the risks. NOACs are too new in the scheme of things for enough to be known about long term risks.

I'm with BobD. If I were still on anticoagulants you would have to pry my warfarin from my dead hand.

faridaro profile image
faridaro in reply to

Thank you Irina for the detailed account of your experience with coumadin. I just phoned the cardiologist's nurse to tell her about my decision to go on warfarin. Unfortunately, she didn't sound very happy telling me that I'd need to avoid a lot of green leafy vegetables, beside going every 2 weeks to their office for INR check. But she is going to communicate my decision to the doctor who is currently on vacation and I am hoping to hear more positive response from him. Just a small question - how much did you have to adjust/limit your diet?

in reply to faridaro

Hi Faridaro. I didn't have to make that many adjustments. This, IMO, is often presented as a bigger deal than it has to be. I would like to share more info so if you will give me about an hour I will PM you. Remember, it is your choice not the doctors. Also for several years I have been on a mostly plant-based diet-lost a lot of weight this way. I'll leave you with this thought til I get back with the PM.

My electrophysiologist who I think is a cut above as a doctor and a person told me to think about food limitations in this way. We want to taylor your warfarin dose to your diet not the other way around. The important thing is to be fairly constant. This takes a little trial and error in the beginning but it soon sorts itself out.

If I listed how many greens and salads etc I ate when on warfarin (and still do) most doctors would keel over.

I also had his permission to test more often if I felt I changed my usual diet for a couple of days and wanted to be sure where my INR stood. Also I learned to adjust my food the following week if my INR was too high or low while maintaining my current dose.

This served me better than 'upping and downing' my dose every week by small amounts. Sometimes numbers would fall back in line by skipping a day. Once you start monitoring yourself you will get a feel about where you are or what foods might make you feel differently, Not very scientific but science is not always the only way to go.

I would sometimes be more concerned if it was too high and I learned that for me eating steamed brussel sprouts and broccoli for breakfast 1-2 days pulled me right back into range. You'll come up with your own solutions.

On my way out to lunch (Probably a big salad!LOL) Watch for PM specifics this afternoon.

BTW it would be interesting to know why the nurse conveyed her feelings. I was a nurse and that is not her job. I would ask her and the doctor. If anyone has valid reasons why you in particular shouldn't take warfarin then consider them. If it just their personal bias then since they don't have to take it it is not their decision.

Also, telling a patient that they should do something because it's easier (ie no testing,etc) is, IMO, opinion ridiculous. I want to do things that are effective in keeping me healthy not what is easiest. "Film at eleven" 😊 irina

MarkS profile image
MarkS in reply to faridaro

Irina's right, tailor your warfarin dose to your diet not v.v.

I think the key is to have a steady intake of Vit K. I achieve this by taking a daily 90mcg Vit K2 pill. This makes any changes in vit K intake due to diet relatively small. I eat a very varied diet (e.g. spag bol last night, Goan fish curry this evening with lots of spinach), yet I remain in INR range 2-3 99% of the time. I do self test once a week and make very small adjustments myself as required.

Could you self-test? It just takes 2-3 mins every week or two.

in reply to MarkS

Hi Mark, Sounds like you do things very similar to what I did. I also take VitK2-MK7. My iron was very low in April and he prescribed 50,000 IU Vit D weekly . He also introduced me to the importance of taking K2 with Vit D.

He explained that Vit D needs K2 to direct it to our bones and teeth and keep it out of the arteries and soft tissue where it tends to go on its own. This was new info for me and I never made the correlation between arterial plaque and Vit D absorption. Worth googling.

I believe we get the best results with Warfarin when we self test. Usually the coumadin clinics try to get you to come for once a month (or even less frequent) testing soon after you begin taking it. It's most likely to do with how they are reimbursed for the testing.

I also believe that the safety of warfarin is tied in with frequency of testing as levels can go up or down and out range fairly quickly- a matter of a few days- and monthly or even 2 week testing leaves too much time for results to do harm before being picked up and corrected. My EP refers to any test result as a 'snapshot in time' so for me doing my own testing narrowed the margin for error time. irina

faridaro profile image
faridaro in reply to MarkS

Unfortunately, I am not familiar with the inr testing procedure, but assume that if blood is drawn from a finger I could definitely do that. Very much appreciate you mentioning vit. K supplementation, I'll have to look into it - my understanding was that it is not allowed since warfarin acts as vit.K antagonist.

in reply to faridaro

Sorry I wrote you a reply but sent it to MarkS. It's about VitK. Thanks irina

faridaro You are right about Vit K. But there are two parts: Vit K (or Vit K1) is the kind that can throw off your anticoagulant. Vit K2 has more to do with being a cofactor with Vit D that helps the D stay out of your arteries and soft tissue and go to your bones and teeth. Like a little Vit D GPS system.

Worth googling the 2 and understanding why sometimes we supplement.

Many people including doctors don't believe in supplements. I believe we have to know what we're taking and why and keep out doctors informed. If our food was grown in healthy non-depleted soil like our grandparents had access to we would get more of what we need in our food. But, IMO, those days are gone. It's an individual choice but I supplement certain vitamins and minerals and feel better for it.

faridaro profile image
faridaro in reply to

Thank you Irina for clarification on vit. K nuances - good to know!

in reply to faridaro

You're very welcome.

MarkS profile image
MarkS in reply to faridaro

Hi Fariidaro,

Here are some references; the case for avoiding Vit K rich foods is wrong: ncbi.nlm.nih.gov/pubmed/269...

Low dose Vit K supplementation improves INR control:

medscape.com/viewarticle/51...

K2 is preferred to K1 as it reduces coronary calcification and has a longer half life. It will initially require one or two extra INR checks and probably a slight increase in warfarin when you start taking it (my warfarin increased from 7.5 to 8), but then your INR should stabilise.

I take 90 micrograms of K2 p.d. which is around the standard dose.

Mark

faridaro profile image
faridaro

Thank you so much!

Cleopatra170710 profile image
Cleopatra170710

Hi Mark.

Very useful information. Thanks

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