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Paroxysmal atrial fibrillation and Apixaban blood thinner (anticoagulant) - please help. Thank you.

Anela profile image
21 Replies

Hi,

I hope someone can help, advise, share their thoughts with me please. I have paroxysmal atrial fibrillation since December 2015. I have been on beta blockers Bisoprolol since January 2016. I started with 1.25 mg, which was raised to 2.5 mg per day in July (which halved my palpitations in frequency and strength) and now, after my three months check up with Cardiologist, it was raised to 3.75 mg per day (to try to suppress palpitations even more). I take two tablets in the morning and one in the evening. I have no side effects from taking this beta blocker, apart from feeling a little fatigued, but I am 'used' to feeling fatigued as I also have under active Thyroid for which I take 100 mg Thyroxin and I also have Undifferentiated Connective Tissue Disease for which I take Hydroxychloroquine 1 tablet per day (200 mg) (I am in remission now and have no symptoms from this disease anymore).

Furthermore, my blood pressure is 120/70, my ECG heart rate is nice and steady, 58

beats/minute, normal PR and QT intervals. My blood sugar and cholesterol levels are within normal. Ultrasound of my heart is normal too. The blood count and ESR were

normal as well.

I am very active - I exercise every day from doing spin sessions, to body toning, hot yoga, walking and swimming. I stopped drinking coffee, I eat healthy (cooking with garlic and turmeric every day) and I only have max one glass of red wine per week. I also take a handful of vitamins and minerals every day.

My question is regarding blood thinner (anticoagulant) Apixaban 2.5 mg. My cardiologist said I do not need to take this yet, however, he also thinks I would benefit from anticoagulation if I continue to have bursts of fibrillation (I am due to go back and see him for a check up in 6 months time). I can have palpitations every day perhaps once per day and it last for 2-5 seconds, or I do not have them for 3 or 4 days at all, and then I have them perhaps couple of times per day, again lasting for a few of seconds. They are not linked to physical activity. They just 'happen'.

So, cardiologist said, you do not need to take blood thinners yet, but if you decide to take them, they will benefit you.

So, I am not sure what to do. My worry about taking blood thinners is their side effects and also it will perhaps be one more medication to take for the rest of my life. My doctor said this blood thinner is very mild, and I would start on a very low dosage. My questions to you are: do you take blood thinners, when did you start taking them, why, how long you been taking them for, what is your experience with them, perhaps you used to take them and now your doctor took you off them and why?

I am really not sure what to do. I also spoke to my GP who said I am in a low risk of a stroke, and she does not think I should take blood thinners yet. My cardiologist also said there is need to take them yet, but I can if I like, as they will more benefit me than harm me.

Very confused and do not know what to do.

Please advise.

Thank you very much.

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Anela profile image
Anela
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21 Replies
Goldfish_ profile image
Goldfish_

It all depends on your risk score (balancing risks with benefits)

clincalc.com/Cardiology/Str...

Presumably you are currently very low risk and this is why your cardiologist has not started you on medication.

Anela profile image
Anela in reply toGoldfish_

Thank you Goldfish. My risk score is 1.

BobD profile image
BobDVolunteer

From what you have said you do appear to currently have a very low risk factor. I would stress that the number , frequency or severity of AF events has no bearing on stroke risk. You have AF therefore you are five times more at risk than a person who does not. Five time what I hear you ask? Well if your basic risk is low then five time not much so from that point of view one tends to agree with the doctors that it is not necessary,

Stroke risk calculators take into consideration blood pressure, diabetes, age , gender, prior stroke and any coronary problems which makes prediction progressive as age and other factors change. I suspect this is why they say maybe in the future.

Many people prefer the feeling of security which anticoagulants give although of course there will always be those who dread them. Yes there are small risks in taking them but also big risks for many who don't. It is a balance thing and only you can decide. Why not go to AF Association website and download the booklet on anticoagulation so you fully understand it all.

Anela profile image
Anela

Hi Bob, I am in my early forties, so taking that in calculation as well as that all my other levels are within normal, and my risk factor currently being 1, doctor said not really necessary to take them right now. However, i totally understand what you mean. My biggest worry or the reason why I am reluctant to take them is because I already take three other medications for the rest of my life and this will be the fourth one which might be for the rest of my life as well. But yes, I understand the benefits as well. Thank you very much for your reply.

Goldfish_ profile image
Goldfish_

So all in all it seems clear that at present this is a minor decision for you .

Rellim296 profile image
Rellim296

There is a magic moment when you turn 65 and at that point any disadvantages of taking an anticoagulant statistically cease to outweigh the advantages. The forum and the medical world is divided in two about the personal advantages of being anticoagulated before this point. Some doctors have had patients on anticoagulants who have had a brain haemorrhage and this influences their advice, as does the reverse situation - people under 65 having a stroke that anticoagulation might have prevented.

The thing is, would you feel safer on an anticoagulant? My GP didn't put me on one when I reached the magic moment because he said I wasn't a typical AFfer (who is?) and had no factors like excess weight, lack of fitness and so on. I wasn't old for my age.

I was nearly 67 when I was referred to a cardiologist and he brought anticoagulation into my life. It made me feel extremely vulnerable. It took me away from being a normal person and I bitterly resented having to carry a card with me at all times, wearing a beastly bracelet and so on. In fact all the trappings made me feel totally trapped and years older than I really was. And all for something that only happened once in a while and didn't seem to have much of an effect. The whole thing took over my life and made me utterly miserable and I lived in fear, feeling picked upon and simmering with incandescence at the same time.

However, three years on I haven't had an accident, haven't bled to death, had a haemorrhage, or come to grief in any way. I'm nearly 70 and the risk of stroke has increased and I'm feeling somewhere round 65. I'm now on Rivaroxaban and totally at ease with it.

hwkmn05 profile image
hwkmn05

It sounds like your risk is less than 001%. Heres the truth, thinners reduce our risk for stroke by a whopping 1 to 2 %. The risk without meds, total stroke risk is 2 to 3%. CHADS score is a joke, cant predict a thing. Avoid chemicals such as pesticides, heavy metals, and toxic household products. Take natural blood thinners such as omega 3 fish oil, nattokinase, vitamin C, vitamin E, and garlic and green leafy veggies. Ever hear not to eat your spinach when on thinners? Yeah, cause they know you could bleed to death.

rothwell profile image
rothwell in reply tohwkmn05

Fantastic to hear from someone like myself who refuses those dangerous blood thinners. I take all of the supplements you mention and have done for 3 years...I am 69 and female so that CHADS score would have me on blood thinners. Who invented the CHADS score?...a major drug company I would iimaghine!!!

Ialla profile image
Ialla in reply torothwell

The Chads Vas (or maybe the original Chads2) score is actually based on very good research. I don't have the citation right now, but it is a Swedish study following about 200,000 people with AFib over a number of years. There are only three authors (very unusual in medical research), & was not funded by big pharma. I thought the same thing when I was first diagnosed because the checklist seemed suspiciously simple. As a retired university professor still had access to medical research. That being said, the results are still a kind of average, so don't necessarily apply to you as an individual. Maybe somebody can provide the citation.

Gracey23 profile image
Gracey23 in reply tohwkmn05

hwkmn05, you have replied to a lot of the conversation recently. I have been going to a Naturopath for about a year and have done a detox and have been taking numerous supplements. I also see an EP who has me taking Flecanaide and Pradaxa. I like most of us has been looking to find the right path to deal with AFib. I'm interested to know your story of AFib , have you had an ablation and what meds you take. It's a very important conversation for our forum to learn about different options. I look forward to your reply, Gracey

MarkS profile image
MarkS in reply tohwkmn05

But warfarin is a natural blood thinner! It comes from fermented sweet clover. If you take other "natural thinners" then the big difference from warfarin is that their effects have not been measured and any dosing is pure guesswork.

hwkmn05 profile image
hwkmn05 in reply toMarkS

Many meds are derived from plant/herbs. The difference is consuming a whole food vs a synthesized chemical version of that food. Thats why meds "work" and also have side effects. 50% of those on warafin could not attain proper INR levels. Then came the non tested type, eliqus , pradax, which are always on the lawyers hit list, for good reason. I always suggest bi yearly serum testing when one takes anything, supplements or meds.

MarkS profile image
MarkS in reply tohwkmn05

Nattokinase is made from fermented soya beans, warfarin from fermented sweet clover, doesn't seem that much difference to me. Also most countries with a decent health system have a far higher rate than 50% in the appropriate range for INR - e.g. Australia where it's 81%. With a Coaguchek monitor an even higher rate is possible such as 99%.

The one thing I agree with you on is that there are serious shortcomings in the trials of all the NOACs.

pottypete1 profile image
pottypete1

Don't be too scared all medicine has risks and side effects.

I have been on warfarin for many years and even after severing an artery in my hand in a bad accident in January as you can tell I am still here to tell the tale. Good doctors and intelligent first aid!

I don't advocate that we should not all be very careful and I do think that we should be mindful of the potential side effects.

However as somebody posted recently it is far more dangerous for any of us to take a car journey or cross the road than to take the drugs that the professionals believe are best to keep us as healthy as our age will allow.

I am past the magic 65 years of age by the way.

Pete

genorm profile image
genorm

I was pleased to read your post, Anela, as I was about to write a most similar one. I am on 1.25 Bisoprolol, (and other medication not connected to Arrhythmias), but my AF moments and ectopics seem to be increasing. I feel as if I am waiting to be 65 to get another point on the scale. My cardio states that to anti-coagulate me now is not needed and stop worrying (oh yeah!)

The replies here are so very helpful; thank you.

Anela profile image
Anela

Just to say, thank you all for your replies.

in reply toAnela

Anela, you no doubt already know this, but the anticoagulants do not thin your blood. And as I said in another thread, the medical stats are per patient year, so some the seemingly small figures are not small when taken over a number of years or even decades.

Thomps95 profile image
Thomps95

Your stroke risk is not five times the risk for a non-AF population. For someone with no risk factors other than AF, the research (which I've posted ad nauseum) indicates a minimal difference in stroke risk for those with and without AF. This same body of research led to the CHAD2VAS2 system. Some confusingly conflate the issues and claim "five times the risk" is somehow "on top" of the CHAD2VAS2 score. But no, that is not what the data show.

Similarly, the stroke risk benefits of anticoagulation are minimal for people with very low CHAD2VAS2 scores, but do become clear for higher CHAD2VAS2 scores. But as has been aptly pointed out above, even minor benefits of anticoagulation (e.g., 0.5% decrease in risk) will accumulate from year to year and hence become very important when you consider time spans of, say, two decades.

So even if your risks are low, it seems reasonable for your doctor to err on the side of caution. Taking anticoagulation is not a big deal, so I'd have no hesitation following your doctor's advice, especially given he is suggesting a "low dosage"

lotusvx220 profile image
lotusvx220

I was put on ellipsis 5 mg twice a day for about 2 months they made me fill I'll back pain unable to sleep feeling tired brushing so I just stop ed taken them I've had a/few for over 30 years now just learn to live with it you feel really ill when in a/f it last for a week or so for me but been all these years with out blood thinners so as I feel much better now I've stopped taken them I know there's a 4 times more risk of having a stroke without them but then life is full of risk s .better for me to feel good than take them and feel ill.they wanted me to take blood thinners 30 years ago so I glad I didn't as I been fine I don't like taking all these drugs.

Mazza23 profile image
Mazza23

Having seen my friend unable to speak or move her left side after having a stroke for me it is a no brainer I choose to take Apixaban I also take 9other medications and have been told even after my ablation I will have to take them for rest of my life in my opinion and I stress my opinion small price to pay if I can stay well

Tarabanara profile image
Tarabanara

Hi,

I have had paroxysmal AF for over25 years and have been taking warfarin since the onset

I have never had any problems with this at all. I don't regard bruises being slightly more visible and bleeding a bit more if I cut myself as problems

I have a perfectly normal life I walk a pack of unruly dogs every day and still work almost full time

I think everyone has palpitations to some degree

I do hope you stay well and happy

Best Wishes Patricia D

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