DOACs: I have just read a 'Healthline... - Atrial Fibrillati...

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DOACs

Karendeena profile image
37 Replies

I have just read a 'Healthline' publication dated January 2023 about the long term effects of blood thinners and anticoagulants. I am a bit concerned with the content of this article and would like members of our group opinions.

The article stated that there was no reversal agent for Riveroxaban and apixaban and when I checked on the UK Government website there is! It gives the risks (which we all know) but what concerned me more was that the Gov.uk website stated that they shouldn't be given for arrythmias UNLESS there are valvular/heart problems, previous stroke or over the age of 75! So I question, why would someone like me with lone paroxysmal afib and no underlying heart conditions be taking apixaban at 5mg twice a day when the risks of bleeding could be greater than the risk of a stroke?

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Karendeena profile image
Karendeena
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37 Replies
Gumbie_Cat profile image
Gumbie_Cat

I found the web page you mentioned, and wonder if it is just badly edited or over-simplified. Usually they go by a CHA2DS2Vasc score. Going by this you get one point for being female, and a second for being 65. Points are also given for other things such as high blood pressure, diabetes etc.

I started on apixaban last year - female and 67. As both of my sisters had strokes due to atrial fibrillation at ages 65 and 64, I was more than happy to take these. I had also had a retinal vein occlusion when I was 64, before AFib was diagnosed, though I suspect it was responsible.

CDreamer profile image
CDreamer

What is your CHADSVaSC score? I haven’t yet read the article as you didn’t provide a link. There is ALWAYS an assessment to be done as to Risk:Benefit and that is something you can only do with good data and consultation with your doctor who knows your history.

You haven’t really given us enough information to offer an opinion other than although Healthline are usually one of the more balanced online health advice sites, they will be speaking generally. ALL of the medical studies which I have read tend toward anticoagulation being not only good prophalactic for AF but also for cognitive decline.

Having had one TIA when not on anticoagulants - I wouldn’t dream of coming off them now as I know my clotting risk is higher than bleed risk.

Karendeena profile image
Karendeena in reply toCDreamer

Hi CDreamer, I couldn't get the link to copy, I'm not the best at technology!! I have just nipped into the score 2 on the Chadsvasc being female and turned 65. I was put on them though when the score was only 1. My biggest fear is that my dad passed at 60 after a brain haemorrhage and he was on warfarin for Afib. It was 34 years ago though

wilsond profile image
wilsond

Just scroll down a few posts.

secondtry profile image
secondtry

Wish that it were a clear decision one way or the other, but alas starting DOACs or warfarin is not an exact science. Different medical institutions have varying opinions as do individual cardiologists & last but not least patients, who know their own body best.

As you have started on them, apparently have had no problems, my suggestion would be to continue. Particularly if you have had all the Covid Vaccine shots incl the booster as I have seen stuff in the media suggesting blood clots have been a side effect for some.

Also it may help to point out that you nor anyone else will be able to say whether you made the right decision or not, as the alternative cannot be played out in a parallel universe 😆 eg I am 70 this year and have now for a number of years decided not to take them (lone PAF in remission) even if I have a stroke tomorrow it could have been the right decision as on them I could have had a brain bleed several years ago 🤔.

Karendeena profile image
Karendeena in reply tosecondtry

Thanks, I will talk to my EP next time I go for follow up. My dad had a brain bleed and passed away albeit 34 years ago, he was on warfarin for Afib but also had clogged arteries. My brother has just had a stroke

What matters, is the profit! People don't... Scare the people to death, and then sell them whatever you want! Sounds rough, but it, literally, is so! Take care!

Tomred profile image
Tomred in reply to

hi nesko, i understand what you are saying, could you elaborate on what precautions you take regarding AF.

in reply toTomred

Hi, Tom! I am 70, have AF since 55, maybe somewhat earlier, but did not understand what was going on. For now, I refuse all the medication and hope for the nature to be on my side. Five years ago, I was prescribed medication for high BP, but refuse them also. Actually, my BP is not so high: 150/100, sometimes 170/110, lol. As for the stroke - with AF, you MAY have a stroke, but, if you listen to the drug sellers, you will SURELY put a ton of drugs through your kidneys. I do not buy the story! My body, my right to decide! Where were anticoags for 100.000 human generations, until late 1900ties...?

mhoam profile image
mhoam in reply to

I guess you're in the USA? The OP is in the UK!

in reply tomhoam

No, not in USA! I am from underdeveloped and stupid country - we did not take the jabs, lol! BTW, what's OP?

mhoam profile image
mhoam in reply to

OP is the “Original Poster”

Apologies for misplacing you, in the UK Doctors in the NHS are not financially incentivised to prescribe drugs. The NHS has many problems but doctor’s motives are not one of them

in reply tomhoam

No need to apologize, really! In my life, I never met a doctor who is money-resistant, lol!

Medical profession has been very cooperative in this game with mutative virus. Shame on them, forever! Have you noticed that, even in UK, where I imagined that medical protection works really well, it is nowadays almost impossible to come in contact with the doctors...? Only per telephone, only for very short time, long waiting lists. They still play together with the team for depopulation. Just look what's coming, you will see that I was right. Personally, I wish you all the best!

Samazeuilh2 profile image
Samazeuilh2

The bleeding versus the stroke risk is calculated from your CHA2DS2-VASc score. Usually a score of 2 or above means that an anticoagulant is advised. I’ve been told by a cardiologist that PAF is no less risky from a stroke point of view than persistent or permanent AF and that going into or coming out of PAF is particularly risky.

MisterMagoo profile image
MisterMagoo

I'm 58, had well controlled PAF, a score of zero and still had a scary TIA before being put on Edoxaban. Despite being an active cyclist and all the dangers that involves on UK roads, I would never consider coming off my Edoxaban.

Tryfan profile image
Tryfan

After a third Afib incident. I was told by my GP that my CHA2D score suggested anticoagulant for life. As a long distance runner, cyclist all round sports player, I was not happy. After 6 months taking Apixaban, I unilaterally decided to stop. A couple of months later, I received a call from my surgery asking why I hadn't requested a repeat script.I gave all the platitudes and reasons why a fit healthy living man had no need to take such drugs.

Move on two weeks, I was shown a copy of a letter to my cardio consultant sent by my GP stating my reasons (great GP service) and consultants reply. Which in no uncertain terms stated my risks and prognosis to my health of being a stroke risk.

Back on Apixaban since that time, with no known side effects. Annual blood test checks liver function.

I have several, now retired GP friends, who have stated that my main concern should be to avoid head injuries and get on with your life. So I take additional care, cycling and other areas where I can help to avoid injury.

TracyAdmin profile image
TracyAdminPartner

Hi there, upon diagnosis your CHA2DS2Vasc score would of indicated your personal risk of experiencing an AF-related stroke. Anti-coagulants are prescribed to help prevent blood clots from forming in the atria that could potentially travel to the brain. As with all prescribed medications, there may be side effects (such as bruising, bleeding) however the benefits from the medication outweigh the risks. You will find our Patient information sheets offer updated information regarding the reversal effects etc.

api.heartrhythmalliance.org...

patient information sheet
Mugsy15 profile image
Mugsy15 in reply toTracyAdmin

Part of your statement is misleading in my opinion Tracy.

The benefit of AC is considered to outweigh the risk only in those with a Chad score of 2 or more. The risk of stroke caused by a brain bleed is considered equal or greater in those with a Chad score of 0 or 1. Added to that are the side-effect risks all drugs carry, especially in long-term use..

The original poster is female and 65 so has a score of 2. She may therefore reasonably decide that the benefits of ACs outweigh the risks. Fair enough. However I am often concerned about the prevailing mantra on this forum that advises all AF sufferers that they should be on ACs. I've often chipped in on discussion threads in which people are being told they should be on ACs if they have AF, without any reference to the Chad scoring criteria.

I'm a 61 year old male with none of the listed risk factors, so I'm not on ACs. Yet if I were a newly-diagnosed, new user of this forum I could easily be terrified into rushing to my GP demanding to be put on ACs!

TracyAdmin profile image
TracyAdminPartner in reply toMugsy15

Apologies for any confusion - Yes of course AC are prescribed if the score signifies a score of 2 or if you have a history of high-risk underlying health conditions.

CDreamer profile image
CDreamer in reply toMugsy15

Not my understanding but there is range of opinion amongst medics - some who would recommended for anyone with Af - but as far as I can see there is little long term evidence yet of any benefit so time will tell. If you are female & 65+ you would automatically have a score of 2.

What hasn’t been mentioned is that doctors need also to balance that with HASBLED score and consider those people who cannot tolerate anticoagulants.

Mugsy15 profile image
Mugsy15 in reply toCDreamer

Quite so, well said.

Sixtychick profile image
Sixtychick in reply toTracyAdmin

I was worried about taking anti-coagulants, but thanks to your information and the people on here, I realised that I would be better off on them, than not. I take Edoxaban 30mg, due to my weight being under 60kg. I try not to eat too much high calorie food, so my weight doesn’t increase. My Dad died in 1986, from a brain haemorrhage and he was on Warfarin. I think that drug makes you more prone to brain bleeds. That is one reason I was scared of going on anti- coagulants, but the new ones are supposed to be safer. I have had no problem with them so far, touch wood.

TracyAdmin profile image
TracyAdminPartner in reply toSixtychick

I am sorry to hear about your father. Warfarin is still prescribed to help reduce the risk of experiencing an AF related stroke, however the DOACS are very popular as they do not require monitoring of INR levels and less likely to interact with other medications and food groups.

Buffafly profile image
Buffafly

My cardiologist told me that by 70 most people have a degree of mitral valve regurgitation so maybe that has influenced the 65 year ‘consideration for anticoagulant’ decision. Although I wasn’t considered to have high blood pressure regular testing over a week showed that my BP varied wildly so now on BP meds as well as Diltiazem with very good effect - despite having max stress over the last few months I have had very little AF. So I wouldn’t put a lot of store on the ‘lone AF’ diagnosis!

Auriculaire profile image
Auriculaire

Basically if you have no side effects from the Apixaban I would stick with it. It is reducing your risk of stroke and Apixaban seems to have the lowest bleed risk. Usually your CHADS VASC score is taken into account which involves more than age. The only controversy there is the point for being female. How often you get afib attacks doesn't come into it. I had a TIA ( though mild) more than 6 months after the previous afib attack. NICE have very good tables which are easy to read for both stroke risk and bleeding risk which are helpful in comparing the two.

javo123j profile image
javo123j

Link to healthline publication. healthline.com/health/livin...

The end of the publication recommends seeing your doctor if you have worries about DOACs.

Ppiman profile image
Ppiman

I can’t find that on the NHS website - it’s the Healthline writer who says that, I believe. I think he’s wrong in some of his guidance from all else I’ve ever read or been told.

Since taking rivaroxaban in 2019, I’ve noticed nothing at all different from before. I think each hospital holds stock of the reversal agent, too, but there will be risks with it, I’m sure, far fewer than not taking it, though.

Steve

pusillanimous profile image
pusillanimous in reply toPpiman

My Cardiologist told me that the reversal agent is very expensive, so not widely available (I'm in South Africa) - the situation may be different in other countries, but he said what they would do if someone experiences a bleed, is put the patient on a dialysis machine. Given that the effect of rivaroxaban is short lived, I would imagine you would just stay on the machine for a short time. I don't know exactly how it works, but that is what he told me when I voiced a possible concern with bleeds. Bleeds are not the only reason for strokes, so you might give up the anti coagulant to avoid bleeding and suffer another type of stroke !

Ppiman profile image
Ppiman in reply topusillanimous

That is very interesting. I’ve read that it is ultra expensive but that it’s stocked in each UK health area. I rather suspect the dialysis method would be the one most likely used though. I hadn’t thought of that. It would likely be very quick and effective, too.

Steve

KMRobbo profile image
KMRobbo

Look up the NICE guidelines.As I remember there is a comparison between Cha2dsVasc2 with stroke risk, and he HASBLED score which is the risk for bleeds.

4 or 5 years since I read it but I believe there is a cut off point based on relative scores and age cones into it.

Maybe that can out your mind at rest.

Gumbie_Cat profile image
Gumbie_Cat in reply toKMRobbo

Much more information there. I think this could be the gov.uk site that concerned the OP. It really isn’t at all clear, and doesn’t mention 65+ at all - which is odd. (It’s in the paragraph ‘Further Information’ near the end of the web page. @gov.uk/drug-safety-update/d...

Must admit that I feel a lot safer taking them due to age/gender.

Karendeena profile image
Karendeena in reply toGumbie_Cat

Thanks, as I said I'm no good with technology!

Tapanac profile image
Tapanac

hello

I have had 2 bad falls. The second one I hit my head very hard on the paving and caused a brain bleed. We called the ambulance as I am on apixaban and although I felt fine they took me into hospital and was given the reversal drug as a CT scan confirmed the bleed. There was no sense of urgency just calmly and efficiently through a cannula. I then had to stop the apixaban for 2 weeks the restarted it

All the best

Pat

Karendeena profile image
Karendeena in reply toTapanac

Thanks Pat, very reassuring. I was a horse rider and been told I shouldn't ride now, Although I have gone past the competing stage I don't like the opportunity of just a gentle ride being taken away from me

WildIris profile image
WildIris

I have PAF, an episode about once a week that starts in the evening then goes away with exercise or sleep. I started on Apixaban this year. It's very expensive in the US, but I leaped in and a few days later I had unbearable itching, no rash except from scratching. I tried stopping different things, then it turned out to be from apixaban. I'm hardly ever allergic to medicines!

Anyway, I can only take 1/2 of a tablet (2.5 mg) of apixaban without itching. I had a $500 investment in apixaban and didn't want to switch off of it. I started taking nattokinase capsules, one of the best studied of the non-drug anticoagulants. In Japan, where its a popular fermented soy product and diet staple, they have low rates of stroke. In the laboratory, it also works, but at measured strengths. The problem with the capsules is that they are not evaluated as anticoagulants, and the strength can vary between batches. There is no problem of overdose though so I'm taking the 2.5 mg or Apixaban plus 300 mg (3 capsules) of nattokinase every day. I'm also doing everything I can to reduce the aFib incidence naturally.

Jackemo123 profile image
Jackemo123

I wonder too. Seek other opinions

Jackemo123 profile image
Jackemo123

Lumbrokinase, Nattokinase, Serrapeptase are all worth looking at

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