preventing clots what are the chances? - Atrial Fibrillati...

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preventing clots what are the chances?

108cat profile image
18 Replies

Someone recently posted that cardios found a clot before a procedure, even though they were on anticoagulants ... someone else posted that anticoagulants are only 75% safe in preventing clots due to AF ... which was a bit of a surprise

I found studies comparing Edoxaban with Warfarin where it seems Edoxaban comes out better, both on stopping clots and major bleeds. However I couldn't see how much better or what the % of risk is.

Do any of you very knowledgeable people know the answer or where to look?

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108cat
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18 Replies
BenHall1 profile image
BenHall1

I would start by looking at an authoritive source such as NICE. Apart from 4 to 6 months on Edoxaban I have always maintained a diet of Warfarin, self tested my own INR and when I need to self dose my Warfarin. Edoxaban gave me sleepless nights due to the most vile nightmares. I rejected it totally along with the other NOAC's. Now back on Warfarin.

BobD profile image
BobDVolunteer

There are wishes and there is reality.

AF makes us five time more likely to have a stroke. Anticoagulation reduces that by around 70% we are told, close to the stroke risk of normal (non AF) people. Nothing is ever 100% proof as we are all different. Apart from the AF the phsyiology of our bodies differs so any "facts" are of necessity averages for a range of people.

I have had things happen to me that are five million to one I was told but still never won the lottery.

We have to accept that life is dangerous but enjoy it anyway.

108cat profile image
108cat in reply toBobD

Thanks very much Bob, if as you say the 70% protection brings the risk close to that of normal (non AF) people that's really all we can ask .. it's good and I'm grateful for it!

Jackiesmith7777 profile image
Jackiesmith7777 in reply toBobD

AF caused my husbands stroke last year

LaceyLady profile image
LaceyLady

I ‘have’ to take Apixaban with my paternal history of strokes and death however, the hospital slapped me on it without consultation full 5mg twice a day. Now, before anticoagulation I am a ‘bleeder’ no one has diagnosed why, it’s not haemophilia but I will bleed for ages and ages if I’m cut. The medical lot are ignoring this and considering they do not adjust medication according to sex and body weight🤷🏼‍♀️ Recently I had a really bad fall on my left hip/thigh the bruise was unbelievable together with a haematoma!! Husband and I convinced I’m over anticoagulated, can I get intelligent help to manage this????? I’m having to lower one dose to see if that helps without any help.

To add to heart issue which was aboard end February I have Haemochromatosis, T2 dire betes, I get skin allergies and some food allergies. No one is joining any dots

108cat profile image
108cat in reply toLaceyLady

can you get a second opinion rather than adjust the dose yourself?

I asked my cardio if I could reduce from 30mg edoxaban to 15mg he explained it's the worst of two worlds, you'll not be protected and you'll still have the bleed risk. So I'm not sure reducing the dose is the answer ..

I think it's important to pester the medics if you can, until you get an explanation and can reduce anxiety ....

I hope things improve for you

LaceyLady profile image
LaceyLady in reply to108cat

My GP suggested that I asked my sister to get a blood test to see if she shows for the bleeding disorder, which she might, so waiting to see how she does.

Autumn_Leaves profile image
Autumn_Leaves in reply toLaceyLady

Your best bet is an appointment at an anticoagulant clinic, if that’s a possibility. If you are under the care of haematology, they work closely with the anticoagulant clinic and can look into the possibility of a bleeding disorder being present. In fact, they can order clotting studies without being referred to an anticoagulation specialist. Whatever your sister’s situation is, you’re still two different people living in two different bodies, so what applies to you may not apply to her and vice versa, so you need your own tests because they’re the only ones relevant to you.

LaceyLady profile image
LaceyLady in reply toAutumn_Leaves

I’m looking at Von Willebrand disorder, the symptoms are possibility. We have GH Compound variant and we’re both blood group A rhesus negative. My GP suggested this route as she said because I’m anticoagulated it may not be possible to do the checks, she has also written to Haematology.

Autumn_Leaves profile image
Autumn_Leaves in reply toLaceyLady

I hope you get to the bottom of this soon,

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

No preventative med is full proof. Also did they take the once a day med on time etc etc.

I chose PRADAXA 110mg x twice as there is an antidote, it is not so strict about timimg or overdose etc.

The clot in the heart could have caused a heart attack or clot en route to the brain cause a stroke.

That's why it is so important to be in the vicinity of 35" swaist women and 49" for men. Eat healthy and sleep your 7-8 hours a 24hr period. Sun for Vit D, B12 level 700 plus for us oldies and mag and pot levels normal.

Supplememts are not the way if your body cant eliminate over normal which points to toxicity.

We can live and hope that with AF a clot doesn't cause havoc.

cheri JOY. 75. (NZ)

108cat profile image
108cat in reply toJOY2THEWORLD49

yes I agree with a lot of what you say, also living in hope ..

MarkS profile image
MarkS

In the original edoxaban v warfarin trial (Engage AF-TIMI), the rates of stroke were 1.5% for warfarin and 1.18% for edoxaban. However, the time in therapeutic range for warfarin in that trial was only 68.4% which is considered to be poor. TTR's of 70-75% are considered to give equivalent protection between warfarin and the NOACs.

So it depends how stable you are on warfarin. Get good stability and warfarin is as good, if not better, than the NOACs.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toMarkS

Hi

Yes but on the other hand NO ANTIDOTE like PRADAXA and you need to regulate it through the blood stream.

PRADAXA is a twice a day with no blood tests required.

They say to keep your greens about the same daiy.

I've had 3 operations after the stroke in Sept 2019 with stopping and no bleeding issues although not heart they were involving cutting and sewing etc.

Thyroidectomy (with uncontrolled Heart Rate) removing 12 lymph nodes and dissectuon at junction

TVT removal when the Johnson & Johnson moved to damage a female organ.

Right shoulder repair which included 3 different issues

So I am very happy with PRADAXA x twice daily and 110mg. I don't need to time taking down to the hour or minute.

cherio JOY

ozziebob profile image
ozziebob

This German research gives the comparative risk advantage of Edoxaban over other DOACs and Warfarin, but not the absolute risk numbers you are seeking ...

pubmed.ncbi.nlm.nih.gov/347...

And this research shows the adherence to taking Edoxaban is higher than with all other DOACs and Warfarin ...

link.springer.com/article/1...

Then the red/green Table in this article does give risk estimates based on 2 variables ie. duration of an AF event, and your Cha2ds2-vasc score ...

onlinelibrary.wiley.com/doi...

I quite like the research results re edoxaban. I hope something above helps.

bob

108cat profile image
108cat in reply toozziebob

Hi Bob, thanks for this it's very helpful and yes Edoxaban gets quite good reviews ...

the following is from Stroke Association (UK) website:

AF increases risk of stroke by around x 5

AF is a factor in around 1 in 5 of all strokes in England

There are on average 40 AF related strokes in England every day.

18% of all stroke patients in UK each year have a pre-existing diagnosis of AF - however 24% of these patients were not on anticoagulants.

As much as 80 - 90% of strokes are preventable. For AF related strokes with the right medication the risk of stroke can be reduced by up to 66%

I'm not great at maths - or science come to that. Can you figure out 24% of 18%? Unless I've got this very wrong - 76% of 18% could give the % of anticoagulated AF patients who have strokes? Does this make any sense?

You may have seen BobDs reply above, his answer - that anticoagulants reduce the risk by about 70%, bringing us to about the same risk as normal (non AF) people - is an encouraging way to look at it.

I should probably watch Wimbledon instead of fussing about things I don't understand .....

Thanks for your response.

Jo

ozziebob profile image
ozziebob in reply to108cat

On your figures, if you have pre existing AF, and you have a stroke, then 13.7% (.18 x .76) of this cohort were taking an anticoagulant at that time, and 4.3% (.18 x .24) were not taking an anticoagulant.

But these comparative risks are distorted because the anticoagulated cohort includes a lot of older patients with multiple comorbidities, and who might have strokes for reasons other than their AF, while the uncoagulated cohort will include a larger number or younger patients with fewer comorbidities, and many fewer older patients.

So that leaves me still with no idea of the actual risk numbers of the 2 cohorts.

In this regard, I still think it's important to understand the red/green infilled risk Table I referred you to in my previous reply.

PS. I am 77 and currently uncoagulated because of the fears around intracranial bleeds I have mentioned before. I personally definitely wish the numbers were more definitive.

108cat profile image
108cat in reply toozziebob

thanks again for your response, it makes sense that since the uncoagulated cohort is likely to include patients who are younger with fewer comorbidities, we are not much closer to an answer.

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