Long term effects of anticoagulants - Atrial Fibrillati...

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Long term effects of anticoagulants

nominingue profile image
39 Replies

Hello. I'm looking for studies or other dependable references to guide me in the decision to continue anticoagulant therapy or choose a non-pharmaceutical approach, Chinese medicine.

My CHAD score is low, 2. I'm female, 72, living in Canada. i've been on Eliquis for 3 years or so. And i'm starting to question whether it's the best choice for my overall health.

I've not found anything on Google documenting long term effects of anticoagulant therapy, which i find a bit strange.

If anyone has suggestions as to to sources i might consult, I'd be thankful.

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39 Replies
BobD profile image
BobDVolunteer

I think the long term effects of anticoagulation in AF are a drastic reduction of stroke risk and less but important reduction in the chances of dementia. I can only tell you that the twenty years I have been taking them have not shown any detrimental affect but maybe you are looking for longer period results?

I can tell you that so called "natural" methods have no measurablility and not recommened.

nominingue profile image
nominingue in reply toBobD

thanks Bob. no, I'm not aiming to live to 90. But to be stronger, not so prone to aches, pains, the cold. I'm looking for clinical studies, but none appear on searches.

I don't consider Chinese medicine simply 'natural'; it's a different approach to our Western, corporate one.

waveylines profile image
waveylines in reply tonominingue

Have you had your thyroid levels checked? Re aches and pains your vit D and bone density checked?I'm not aware that anti coagulation causes any of those symptoms you describe. The main danger is bleeding. There is current research project looking at varying the dose. But that will have another 5yrs to run.

Cliff_G profile image
Cliff_G in reply tonominingue

Some of the TCM preparations have some pretty darn potent herbs in them. Difficult to track down what they are in English language, but do your research on them too. There are papers in PubMed and Google Scholar looking at some of these. Ask questions of your TCM practitioner and be even more wary if the answers don't make total sense and if they seem to be waffling a bit.

I'd have to say, unless you were getting specific symptoms from the Eliquis I'd personally be wary. The Patient Information Leaflet and ditto on-line in the PIL version for doctors should provide enough info, and ChatGPT will be able to provide you the 'received wisdom' on this with respect to the long-term. A main risk on any a/c is elevated bleeding if you cut or damage yourself.

CHA2DS2-VASC is 2 just from your age and female and is a 2.2% to 2.9% per year stroke risk (MDCalc). A "low" score is 0 or 1.

Cliff_G profile image
Cliff_G in reply toCliff_G

p.s., as the latitude in Canada is relatively high with therefore less sun, get your Vitamin D level checked and if needed get it to at least 100 nmol/L up to 150.

Hampden profile image
Hampden in reply tonominingue

Have you found any controlled trials where Chinese medicines are used?

BenHall1 profile image
BenHall1

Hi - I've been on Warfarin (Coumadin to some folk depending where on the planet you reside) for 15 years ....... without any side effects, good, bad or indifferent. I've stopped and started Warfarin for two surgical procedures and one Scan, all at different times/different years ... no sweat. I was 65 in 2010 when I started my Warfarin journey, I'm 80 now, yeah and if I carry on like I am I'm quite happy to go for the 100 years. So long as I have my good friends, aiding and abetting me - Warfarin ( and other drugs) and my small quantities of booze and my wifes cooking. 😀

So my anticoagulant, Warfarin, has enabled me to lead a fit, healthy and active life, I stopped work finally on 5/7/24 - I was a bus driver. I would also add - my employer and my bus drivers licencing authority had a full declaration from me ( with my GP's details too) as to my sound health for being a bus driver ( double deckers).

I get you don't wanna live to 90, so quit all your meds now and see what happens. You wanna be stronger, without aches, pains and cold, maybe moving to my homeland, Australia ! would be the go. By the way, I'm now in Cornwall, UK and I don't get aches and pains but I do feel the goddam cold! But I wrap up and deal with it.

Personally, I think you are looking for the wrong culprit for your strength, aches and pains issues .... may simply be an aging thing. Maybe you are on the wrong anticoagulant try something else, there are at least 3 or 4 other a/c's available. I tried Edoxaban at one stage for 6 months - well what a disaster with side effects that was, I returned to Warfarin, wasn't even prepared to discuss it with my GP..... other than to tell her what I planned and why !

Having tried Edoxaban .... no way would I play with Chinese medicine, regardless as to how it was presented to me.

John

Responsable profile image
Responsable in reply toBenHall1

It's always a pleasure to read your comments, John, because of your positiveness! Stay well!

BenHall1 profile image
BenHall1 in reply toResponsable

Thank you for your comments Responsable ....... I do try to remain positive, doesn't always work though. You stay well too.

John

Carew profile image
Carew in reply toBenHall1

I tried Edoxaban at one stage ...

What were your problems with Edoxaban?

I had minor (but unwanted) problems with Apixaban and Rivaroxaban but seem OK on Edoxaban.

BenHall1 profile image
BenHall1 in reply toCarew

Edoxaban ....... the most dramatic, ghastly and vile nightmares imaginable. Waking me at night and very disturbing. They didn't magically just happen .... started normally, jogging along just fine .... and then, gradually, very gradually the dreams started and grew into nightmares and these vile things I have mentioned. My GP, whilst being good is an advocate of these NOAC's, but I just explained everything to her and told her it was back to Warfarin. She didn't object as I have a history of using Warfarin ..... perfect INR's and no problems.

Carew profile image
Carew in reply toBenHall1

Thank you.

Always interesting to know these things partly out of natural curiosity, partly in case anything happens in future.

I found some information which suggests that any issues with DOACs might be at least partially explained by genetic variants. And there are reasons to wonder if that is why I had some issues with the others.

ForensicFairy profile image
ForensicFairy

There are some studies which reflect an overall positive outlook for long-term use. Lookup PubMed’s ‘Long term follow up of direct oral anticoagulants and warfarin therapy on stroke, with all-cause mortality as a competing risk, in people with atrial fibrillation: Sentinel network database study’ and the AHA Journals ‘Long‐Term Medication Adherence Trajectories to Direct Oral Anticoagulants and Clinical Outcomes in Patients With Atrial Fibrillation’. While neither have a focus on long-term use they both indicate outcomes of long term use (if that makes sense!).

SlothOnSpeed profile image
SlothOnSpeed

I have been on Xarelto for 11 years. Never had a problem. The stroke risk out weigh any other risk for me. But I’m early 50’s and still have dependents. So maybe that colour my outlook.

javo123j profile image
javo123j

Whilst I've only been on Edoxaban for around 5 years my Mother was on warfarin for 30 years and then switched to apixaban for the last 6. She is now 96 and well.

Mollydex profile image
Mollydex

have a look for Cochrane anticoagulation reviews. I would expect that finding reviews on Chinese treatments would be the difficult bit. I think the cardiologist is probably the best gold standard information for us . They will have critically reviewed evidence and also have awareness of our personal cardiac history. Good luck in your research. Let’s us know your decision. Happy reading

secondtry profile image
secondtry

I would be very sceptical of any research funded by Big Pharma (that incl indirectly through say a University grant) that finds no detrimental affect of continued use of anticoags. More confident with comment here however anecdotal.

I postponed going onto ACs for 10 years when offered by my cardiologist who reluctantly agreed with no comorbidities, active life and very infrequent short AF episodes I was OK until mid 70's; a similar opinion comes from the European cardiologists Society (sorry forgot their real name) guidelines. However I did start this year as AF became daily albeit not debilitating. My reasoning being on balance my circumstances just made it prudent and DOACs as convenient.

mhoam profile image
mhoam in reply tosecondtry

secondtry of course we are all entitled to our own opinions, however I have great difficulty understanding the cynicism that prefers anecdotes from unknown people on the internet to the results of published peer-reviewed placebo controlled double blind trials!

secondtry profile image
secondtry in reply tomhoam

I guess I must have over-dosed reading about the Covid jab 'safe & effective' saga. Researchers paid to do trials and other equally relevant trials not being published eg on Ivermectin concern me.

At least with comments here we can rule out the influence of money 😀 and when you have been on as long as I have you get to know the more reliable opinions.

mhoam profile image
mhoam in reply tosecondtry

Thanks for the response. After listening to Ben Goldacre live and reading Dr John Madrolo’s blog regularly, it seems that the pharmaceutical industry, especially in the USA, has done itself no favours. However, in the UK, the MHRA and NICE are “honest brokers” that I am prepared to trust.

secondtry profile image
secondtry in reply tomhoam

You sound well informed. Here in the UK my trust is with the World Council For Health based in Bath.

mhoam profile image
mhoam in reply tosecondtry

You trust an organisation that has promoted Ivermectin as a Covid treatment and promotes many conspiracies theories?

Efka profile image
Efka in reply tomhoam

I too follow the world council for health with great interest. I don’t take everything on board in the same way I certainly don’t take all so called nhs/mhra recommendations on board. And there is no doubt in my mind the UK and EU are just as prone to corruption and malfeasance as the US, often just less visible du to differing litigation.. The whole world after all deals with the same group of companies and influencers.

mhoam profile image
mhoam in reply toEfka

Efka If I understand your comment correctly, you don't believe everything the World Council for Health (whoever they are) states and you don't trust all the recommendations from the MHRA and NICE so how then do you come to any decisions about your health, or is it all just "gut instinct"? Do you disbelieve everybody or only those who say something you disagree with?

Efka profile image
Efka in reply tomhoam

Great question I’m not sure I have a clear answer. I definitely don’t disbelieve someone/something just because I don’t agree and I strive to learn continuously.

For me a lot depends on the situation, as in is it a one off issue or a lifelong issue, is it low risk or possibly higher risk. I try to research many different angles and options and then come to an as informed decision as I can. And I absolutely listen to opinions (professionals and patients like on this forum) as well as published research.

I take personal responsibility for my own health and as such know the ultimate decision always lie with me.

I hope that clarifies somewhat, Eva

nettecologne profile image
nettecologne in reply toEfka

Hi Eva,

this ist exactly my point of view too. My body, my choice;) Also I am 65 and have seen many medical recommendations revoked. New discoveries etc completely overturning seemingly fixed medical knowledge. Also I have had horrible personal experience on ALL NOACs, Warfarin being the best, but all intolerable for me. And this includes measurable problems , like liver labs getting worse and kidney bleeds. Plus, the way those NOACs were pushed upon the market and the patients was ugly. Simply ugly. I think maybe in about ten years there will be studies on problems and on long-term side effects. Right now the lobby is too strong and the studies are mostly financed by the firms manufacturing those drugs. Just my POV.

Efka profile image
Efka in reply tonettecologne

Yes! (Sadly) we live and learn as does science…

Wilkie1 profile image
Wilkie1

I haven't any sources of information that I can point you towards. My own situation is as a male with an age related chadsvas score of 1 which is pretty much the same as a 2 in women ( my understanding is that guidelines may be changed to no longer give the extra point for being female). I have been on anticoagulant for about 18 months now . Since ablation in August I have not had a further episode of Afib. My EP at 3 month review was keen to stop my anticoagulant. I was more wary and so he suggested that I stay on it for a further 3 months I think to allow me to adjust and gain further confidence in my ablation outcome. Overall he explained that with anti coagulation there's a risk of major bleeding including a hemorrhagic stroke. So considering my current no/low Afib burden and my low chadsvas, the risk of a bleed with the anticoagulant outweighed the risk of stroke without it. So in response to your question about the long term risk of anticoagulant, if otherwise tolerated, the main risk in the long term from anticoagulant is experiencing a major bleed.

Silvasava profile image
Silvasava

I had a stroke in December 2019, further investigations revealed afib and DCM, Luckily the stroke was thrombolised with no after effects. I was put on Edoxaban immediately and have been on it ever since with no adverse effects. I also went through major stomach surgery in August with no complications. TBH I'd be more concerned with the possibility of a major stroke than the long term effects of AC's

Jackiesmith7777 profile image
Jackiesmith7777 in reply toSilvasava

Yes my husband had his stroke in his sleep so they couldn’t thrombolise it as they wernt sure of the 4 hour timescale

Silvasava profile image
Silvasava in reply toJackiesmith7777

I do hope it hasn't affected your husband too badly, I was very very lucky

Jackiesmith7777 profile image
Jackiesmith7777 in reply toSilvasava

If you read my posts you will see his journey x

DiyChas profile image
DiyChas

There are quite a few references to Eliquis/Apixaban here in Canada.I have been managing well on it a few years (AFib, HF) and, in Feb when I am 80, it will be cut in half.

My cardiologist indicates this is std practice.

Tomred profile image
Tomred in reply toDiyChas

Wondering why they would half the dose when you are 80, is clotting risk somehow reversing ,just curious.

DiyChas profile image
DiyChas in reply toTomred

Apparently, in Canada, that is the std."Label recommendations for use of apixaban in NVAF are 5 mg twice daily, reduced to 2.5 mg twice daily if patients meet 2 of the following criteria (age ≥ 80 years, weight ≤60 kg, serum creatinine ≥1.5 mg/dL) or coadministration of a strong combined Pg-p/CYP3A4 inhibitor if otherwise qualifying for 5 mg twice daily."

FraserB profile image
FraserB

You’re absolutely correct that while the benefits of anticoagulation for moderate-to-high stroke risk are well-documented, there’s limited research addressing the long-term effects of decades-long therapy with direct oral anticoagulants, particularly in patients with lower stroke risk (except those under age 65). Warfarin is much better studied in this context.

Also emerging drug interactions with DOACs are becoming more apparent. I would first discuss your concerns with your doctor or a medical professional you can trust and have that conversation you really need right now. Unfortunately, it may be challenging to find one as many follow standard guidelines or "the script" as they say.

The reason I continue taking a DOAC is due to my age (over 65). With aging, even when it’s not immediately noticeable, the body’s resilience declines each year, and the risk of a stroke—which for me would be devastating—increases. But my decision has come with gathering family medical history, medical information on the medication and talks with my cardilogist of balancing bleed with stroke risks which fits me now but not necessarily someone else.

Efka profile image
Efka

Hi I love this question and I wish I could help more. A personal risk vs benefit assessment is key to true informed consent.

Thought I would add a few other search options:

Rxisk - has a good database for adverse events which captures often more unusual issues.

Yellow card (uk) and eudravigilence (eu) and VAERS (usa) - can be questioned alas I personally find them difficult to manoeuvre.

GreenMedInfo - has a large database where you can search by substance or condition etc and it will bring up research articles and abstracts.

Best of luck, Eva

nettecologne profile image
nettecologne

You might also think about a lower dose. There is at least one study which showed that for Edoxaban, for example, half or even a quarter of a dose might be helpful and less risky, even lowering death rate more compared to fulll dose.

Efka profile image
Efka in reply tonettecologne

Very interesting! Have been asking our specialist nurse for recommendations around “minimal therapeutic doses” for various AF and HFrEF drugs. Nothing back yet…

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