A GP tried to frighten the life out of me so that I would take Rivaroxaban before I had turned 65 when my Chads2vasc score was 0 and according to the guidelines the risk of taking thinners outweighed the benefits. Now I'm 65 my score is 1 and whether I take them is 'optional but every doctor speaks to me as though I should be taking them. It turned out to be a great advantage that I wasn't taking them when I had my appendix removed before Christmas. Can anyone explain this continuous pressure from doctors which doesn't appear to accord with the Chads2vasc test and guidelines? Thanks in advance.
Why the pressure to take blood thinners? - Atrial Fibrillati...
Why the pressure to take blood thinners?
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Ivan_the_Terrible
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Hi Ivan.
I hope you had a good Christmas and wish you all the best for 2021.
I posted a day or so ago about such med's. For what it's worth I would be very tempted to follow your doc's advice. I think it's important for your age group - a stroke is the last thing anyone wants.
At your age yes I would agree with your doc.
That's just my opinion and as an adult you have every right to decide yourself.
Paul
Thanks, I posted a reply to all the replies.
I started anticoagulants before I was 65 and happy to do so as the risk of a stroke was a risk to far. Being on anticoagulants doesn't effect having operations as you just need to stop taking them for a few days, I had 2 ops last year without any problems. It is absolutely your choice whether you take them or not.
Thanks, I posted a reply to all the replies.
It’s obviously a personal choice but doctors know only too well what the consequences of having a stroke can be so it’s not surprising that some do everything they can to reduce the risk of it happening.
Ivan_the_Terrible• in reply to
thanks, I posted a reply to all the replies.
I had an emergency hip replacement following a nasty accident .Missed a couple of doses of Apixaban and then down to have op. I was 78 .When i came round they gave me a replacement for Apixaban but quite soon I was back on to my normal dose.I had had a really mini TIA /embolism?some years ago hence the need for Warfarin and then later Apixaban. I take it because i do not want another TIA.It might not be so small next time.
thanks, I posted a reply to all the replies.
When our heart beats out of rhythm the chambers don't pump the blood through as well and some remaining in the heart can pool, there's a chance this can form clots which the heart could send out at any time. These clots can cause a stroke and taking anticoagulants lengthens the time before they form and prevents this happening.
I've worked at a nursing home where we had people who had suffered from strokes, some couldn't eat (fed via a tube), talk or move at all. It appeared to me to be a living death! That's why, much as I don't want to, I take my anticoagulant pills.
The only reason I can think of, apart from a physician's knowledge of your overall health, is that, given what doctors experience from dealing with AF stroke patients, they feel the need to warn you.
CHADs scoring and other statistical tools work across a population but at individual level I would be inclined to trust my docs.
I would rather take no medication at all, but I down my anticoagulation tablets without a second thought. No side effects, no excess bleeding to speak of and protected from a stroke. When I was diagnosed with AF I was under 65 but my GP prescribed them anyway and said the Chads2vasc score and guidelines are just that; guidelines. He took great care explaining the risks and benefits of anticoagulants to me and since then, having seen the devastation a stroke causes it was the right decision for me. I understand your reluctance but there are some members on here who have also scored 0 and have suffered a stroke.
My relative had undiagnosed af and had a massive stroke. His daughter being a hospital consultant got him to hospital within minutes. His life was saved, however his stroke was so huge he lived an awful life bed bound for seven years before sadly passing away. I take my anticoagulant without a concern having seen his depleted life. It’s your choice we can only ever do what we think is right for us.
I didn't want them either, despite a weight problem. I was in my early 50's. Then a friend's husband had a massive stroke and nearly died. He was fit, active and very much the bread-winner for his family. He had to have the top of his skull removed for 6 months to let the brain swelling subside. If they hadn't taken the skull out he'd have died. He had no risk factors.
I went straight to the GP's the following week and asked for them. I'm not pleased I'm on them because I have persistent AFib now and no longer worry about that aspect. I'm having a tooth out soon, just need to stop taking the tablets for a couple of days before, although I don't notice I bleed any more than before if I cut myself. It's still hard to get enough out for a finger prick home blood test kit.
Hi Ivan,
Your doctor informs, but you decide. I totally support your wish to remain in control.
J (-:
I am very grateful for all responses. Because of anti-bot software it's tricky for me to post. Hope this gets thru.
Itis very confusing! My cardiologist put me on them as part of the package of Afib meds. I decided also to have a once- off appointment with a highly- rated electrophysiologist ( my cardiologist was informed) in London who was treating a friend. After a battery of tests he asked me why I was taking an anti- coagulant as my only risk was being a woman. How are we supposed to make informed decisions based on what experts tell us if the message is not the same?
Dance sehr. (I'm advised not to use the same words in different posts or the bot will block me so I must express gratitude in a variety of tongues)
Do you mean Danke or are you spelling it the other way to make it different?
Autocorrect.
Yes I get it. I don't have that on the laptop, but my phone has it. If I put in a German word I keep having to correct it.
There is always differences of opinion amongst doctors, there are no absolutes.
We as patients make emotional decisions, not logical ones, much as we would like to think it’s through reason & I discovered I’m far more scared of stroking out than any affects of anticoagulants.
That makes sense, yes . But I was just a bit perplexed when an electrophysiologist said I didn't need anti- coagulants. He of all people as the "electrician" specialist of the heart would've thought differently I assumed. I'm on Pradaxa which gives me indigestion sometimes for days ☹️ Thank you for your reply and I wish you a peaceful 2021.🙂
Gave me indigestion as well, common side effect. I changed to Apixaban & not had any further problems.
I had indigestion on Pradaxa as well. I find Apixaban better in that respect though I think it worsens my joint pain! But I nearly always get side effects from drugs. I cannot even take Paracetamol for more than a day or two. But having had a TIA ( 6 months after an afib episode) I am thankful it was not a full stroke and take it.
Je vous en prie 😂
I stopped anticoagulants after I maintained NSR for more than 12 months after ablation with CHADs of 1 for being female. My EP wasn’t happy I stopped but said it was my choice but as soon as I turned 65 he would insist. I had a TIA a few months later, thankfully I recovered within a few days. From being extremely reluctant to take anticoagulants I am now very thankful for them.
The statistics of stroke & TIA of those taking anticoagulants against those not speak for themselves.
My EP stopped mine after a (seemingly) successful ablation last year, with my score as 1 due to hypertension. I'm under 50 so I guess the concern was staying on them for too long. Not had another episode since my ablation but still have ectopics and flutter from time to time, so not as convinced it was as successful as the docs are!
PS - I didn’t stop anticoagulants prior to pacemaker revision - just didn’t take my morning dose.
If anyone has the statistics I'd be most interested to see them. The chad2vasc recommendations are presumably based on statistics. I wish to make my decision based on statistics rather than individual cases. I appreciate that a majority of people may make decisions based on their reaction to individual cases and I appreciate the many reports of cases presented above, (need a thesaurus to avoid the (ro)bot.) but the chad2vasc approach is based on the hard-headed calculation used by NICE which puts a cash value on a quality-adjusted year of life, which horrifies many people.
I am very pleased to hear a range of opinions here and reassured that some members share my perspective.
I too share your perspective, Ivan.
I stopped taking them but am reaching the mythical 65 so started again. I ride and felt the risk of falling off the horse and getting a brain bleed ( even wearing a hard hat) outweighed the stroke risk. In the end we make the decision but it's not always easy.Stay safe and may 2021 be better than 2020!
Thanks. Since being diagnosed I have made a decision to avoid stress and so don't get into heated discussions, campaigns etc.. and feel much better for it. I also don't get into vigorous exercise, I'd rather have a long walk than a short sprint. If I am going to undergo stress such as a plane flight I probably would take rivaroxabzn for a few days, just as I had to take it for a while when I had a cardioversion.
I'm 60 this year and I'm not taking anticoagulants either and don't want to. My score was 1 a couple of years ago and is now 0. Neither my gp or cardiologist have ever pressured me into taking them though have advised that 65 is the age when I should.
Hi how come your score went to zero from 1 in chads
I managed to get my blood pressure down possibly through increased regular exercise and a healthier diet. I am on bisoprolol 2.5mg which I'm fine with.
I did not notice any side-effects from 2.5 my bisosprolol but when it was increased to 5 my when I was in hospital with appendicitis I found I had nightmares and now notice an increased tendency for dreams when I take only 2.5 mg.
Very wise, stress is the biggest antagonist for illness, lowers immune response so last thing we need.
Lots of studies - just do your research or go onto AFA website & read their reports - based on stats & studies.
I am 60 and have taken apixoban for 2 plus years now. I was reluctant as my dad was on riveroxyban then warfarin for afib and had bad side effects. But the side effects of apixoban that I notice are zero. I do believe it protects against stroke and rather like any prophylactic / preventative medicine you can never really know if you needed it. If I had not taken apixoban would it have made a difference?? I have no idea
but I use the pessimist approach. How would I feel if I decided not to take it and then had a stroke?
I think this issue is a matter of personal “ ethics” as much as medical advice so there can be no universal right or wrong answer.
I'd be surprised if anyone feels judgmental or self-righteous towards others in the way you characterise.
In 2019, I was due to stop my temporary anticoagulation following a successful ablation for atrial flutter when a single bout of atrial fibrillation put an end to that. My cardiologist explained that it was now life-long rivaroxaban for me or to risk a single microthrombi from my heart ending up in my brain with devastating consequences. I didn't feel that I had a choice and so I accepted his advice. I was told that the risks of a stroke far outweighed those of a haemorrhage.
I trusted my doctors to have my best interests at heart and they have never given me reason to doubt that they do.
Steve
Hi Ivan, posts on ACs always get a good response here!!
I am an active BMI 23 67yo male with well controlled AF thanks to Flecainide & lifestyle changes with a CHADS score of 1. My cardiologist would prefer me to take ACs (and in fact on my request gave me a scrip for PIP) but is OK with my decision to postpone taking them, which is based on:
A concern that DOACs haven't had a reliably long track record yet (accept warfarin has)
A concern that they may cause other complications - some you will know about (e.g. a major bleed) and some you won't (e.g. micro brain bleeds leading to late stage neuro issues)
Having had another, unrelated to medicine, professional career (without the pressure of drug companies), I know I always still used to advise my clients with a bias towards caution rather than a more balanced view
It is convenient under time pressure to put everyone in one category (i.e. over 65yo take ACs) but the likely reality is the best advice is an age range dependent on many individual factors e.g. I may start taking them at 70yo
You requested statistics to make your decision, what I have seen quoted are:
Most commonly, you are x5 more likely to have a stroke if you have/had AF
Taking ACs does not guarantee no strokes but I recall a figure of 65% effectiveness
The lifetime incidence of an abnormal clot in the general population if you have/had AF is 1 in 20,000 (it was not mentioned if 'general population incl all comorbidities or none)
All the best
1 in 20,000 seems extraordinarily low. You've surely a greater chance of being killed in a car accident.
I do agree that in deciding whether to take out insurance it's not a question of whether premium times risk equals potential loss, in taking out insurance one usually errs on the side of caution.
• in reply tosecondtry
I am 68 of age, male, BMI 25, with AF every night, but not taking any medication, anticoagulants included. I am afraid to be kicked out of the forum, so do not dare to advise the same to others, but would like to discuss one single thing.
In the course to achieve blood coagulation, it is necessary to have extremely high concentration of platelets, which can be reached by intense platelet production (prolonged being in AF, say permanent AF) and being dehydrated at the same time. It would mean that only people with permanent AF and peeing a lot, without adding fluid, would be in real danger. Why would the rest of the patient take anticoagulants? For two reasons - first, MDs are not aware of the fact, second, I do not dare to comment, but has something to do with the money.
Ivan_the_Terrible• in reply to
so are you suggesting that a good level of hydration lowers the risk of stroke? Makes sense.
• in reply toIvan_the_Terrible
I am not medically trained, but I am technically trained, and very well! There are the laws of nature which determine how the things happen. In the course to achieve crystallization, the solution has to be very reach. In the same way, for the blood coagulation to happen, platelet concentration has to be very high, what happens when the platelet production is high (well known fact for prolonged AF regime of the heart), what can also be enhanced by loosing fluid.
Despite being 68 of age, I often work in confined space, squatting for long time, what stops blood circulation in the legs and can also have negative result regarding coagulation, but not any problem until now. In the night, I often wake up with my arms numb, meaning that the circulation was stopped long time ago, but there was also not coagulation (until now, lol).
Ivan_the_Terrible• in reply to
I find I wake with numb arms too. I don't quite understand the significance of this, I'd be very grateful if you could clarify.
• in reply toIvan_the_Terrible
If a person has an AF bout at night, what I usually have, than the blood flow-rate drops to about 60-70% of what a heart supplies in NSR. The drop in flow-rate gives an drop in BP, so the blood is driven less efficiently through the blood vessels. When lying on one of the arms, in such a regime, the heart is not able to push the blood through the squeezed vessels, so a part of the arm remains without blood until we change the position. Some of the blood remains trapped in the arm, the fluid can be drown from the blood, and the concentration of the platelets can reach a critical value, so it is not favorable situation regarding clotting. As for the part of the body that has remained without blood, it is not a problem. In a contact with reconstructive surgeon, I have been told that the parts of the body, that have been cut off and without blood supply, can be reconstructed within 24 hours without any problem. Only the brain is sensitive to the interruption of blood supply and can not stand it for longer than 3-5 minutes.
I don't know why but I have also noticed this numbness over recent years, only the right arm as I don't sleep on my left side due to it being a potential AF trigger.
It is said when you get older you 'forget' to drink. I have therefore developed a routine of having two pints of water everyday (in addition to teas/coffees), which I drink warm with just a drop of blackcurrant cordial as I find it easier to drink that way. As I don't take ACs I also have two brisk mile walks per day and take supplements (garlic & Krill oil) that may help to avoid a clot.
Thank you for your statistic of 1 in 20,000 for lifetime. Lifetime would not be age range geared. I would love to read the article. Do you have it handy?
nationwidechildrens.org/con...
Thank you for the article that focuses on Factor V Leiden and which includes other causes of abnormal clot formation:
" Factor V Leiden is one possible cause of abnormal clot formation, there are many others. Examples include abnormalities in Protein C, Protein S, Antithrombin, and Prothrombin 20210. Another disorder which leads to increased clotting is the Anti-Phospholipid Syndrome. "
The article does go on to say that you can be tested if you have this abnormal gene via DNA testing:
"The presence of Factor V Leiden is easily diagnosed with a laboratory test. This test looks at an individual's DNA to see if they are making normal Factor V or the abnormal Factor V Leiden. It also identifies if a patient has one or two copies of the Factor V Leiden gene."
It would appear that the other above clotting genetic disorders can also be tested for via DNA testing.
So one might prematurely conclude get DNA tested for gene clotting abnormalities as a way to determine whether one should take anti-coagulants.
But wait. For afibbers, the clots are generally coming from the left atrial appendage and in terms of pooling of blood rather than genetic abnormality. So, I would question the interpretation of 1 in 20,000 would be applicable to affibers.
Nevertheless, I found the article very informative and certainly important to add to an affiber's undertanding of clot formation.
Hi Cuore, you could well be right. I have not seen other stats for Affibers elsewhere, just that we are x5 more likely to have a clot, without quoting the resultant stat itself e.g. 1 in 1000 or 1 in 2000 etc. I am surprised, if reliable, that this figure isn't more well known as it seems to me this is more important for our individual decision to take ACs according to each person's take on the risk factor. For me 1 in 1000 would mean I would postpone taking ACs whereas for someone else more risk averse no doubt they would would take them.
Back to the article, it simply quotes 'The lifetime incidence of an abnormal clot in the general population is 1 in every 100,000 people' ; unfortunately it doesn't specify in any more detail which clots are excluded e.g. re AF or a head trauma. In posting it here, I just assumed it would have been too difficult for the researchers to distinguish what was the primary cause and what was exclude, therefore they just took a generic figure.
The 'wonderful' world of statistics!
Not so long ago I bought a popular book on mathematics which stated that a majority of GPS don't know the difference between relative and absolute risk. I am 100,000 times more likely to be struck by lightening if I go out of my house rather than stay in but that does not of course mean that I stay in.
I have not seen statistics on clots due to AF (from blood pooling in the atria). I have been given that an anti-coagulant is about 65% protective, and also a figure for a percentage of AF related ( I don't remember right now) strokes of total stokes. I have not been able to locate a figure of strokes with anti-coagulants and those without. I do not like and am most annoyed with the fear-mongering that without an anti-coagulant you will get a stroke. I have bought into this fear-mongering and I do take an anti-coagulant. A friend of mine does not. He takes nattinokinose and other herb. He does not have other comorbidities and I do (blood pressure). Anti-coagulants are so expensive, so there would not be trials about not taking an anti-coagulant in addition to the irreversible nature of a stroke. Of course, I am referring to a situation whereby one has had an ablation and remains in sinus, not paroxysmal, persistent AF or permanent AF. Those categories do have risks of pooling.
'Anti-coagulants are so expensive, so there would not be trials about not taking an anti-coagulant in addition to the irreversible nature of a stroke. '
Thanks, but I do not understand this, surely given the expense there would be trials about not taking them.
What I was trying to say is that pharmaceutical companies have spent a lot of money to come up with anti-coagulants and now they must recoup their costs as well as make their profits. It would not be to their financial benefit to have trials not to take their products. Trials not to take them would have to be sponsored by other than pharmaceutical companies . I certainly would welcome such trials. I was told by an EP about an Oceans trial but I have not come across it.
Thanks, now I understand and indeed one should follow the money. Who indeed is going to pay for tests on 'natural' meducines, as there is little money to be made from them?
There have been trials - my GP surgery was involved with one about 10 years ago to see if Fish Oil would reduce stroke risk. It didn’t.
The problem is consistency of metabolisation from food supplements & how do you monitor and know you are protected? Anti-coagulants work because how they are metabolized has been worked & shown to be consistent & effective.
There was a case a few months ago of a guy taking garlic, the Japanese seaweed stuff, garlic & a few others, completely overdid things and died from bleeds. The study which looked at consistency was what convinced me.
Which suggests you can cut the risk of a stroke by judicious use of alternatives but that you can't be sure by how much. Any elaboration on what the Japanese seaweed stuff is would be gratefully received.
Ultimately, it is about what you value as quality of life.I thoroughly agree with your right to choose which Doctor you visit and whether you agree to take their advice.
GP's , unlike specialists, are required to know a little bit about everything. This usually results in a safety first approach and referrals as a matter of course.
Although i have Afib, I was put on warfarin after a series of pulmonary embolisms some years ago. I took the warfarin, not because of any fear of death, but the pain and debilitating effect these PE's had on my life.
After years of regular INR blood tests and restrictive diet my GP suggested changing to Rivaroxaban. This drug has proved to be non-intrusive with no side effects in the 4 years I have taken it.
It's really up to you.
The choice is yours, as are the consequences.
I can't say I noticed any side effects from Rivaroxaban other than a possible weight gain of 1 kg. I did ask about taking a lower dose and my GP said it wasn't worth taking less than 20 mg, which I don't understand. However the more I deal with GPs the more I come to see their knowledge as limited. I might feel happier with a minimal dose of wayfaring.
20 mg of rivaroxaban is the recommended dose unless you have renal problems. With Warfarin you would be told what dose to take depending on the results of the regular blood tests you would be required to have.
These measure the time it takes your blood to clot and provide an "International Normalised Ratio" (INR) - 1 is the normal and between 2-3 is considered the therapeutic range.
At any time you could take between 1mg and 10 mg depending on your blood test.
You have to control your diet and avoid anything that contains Vitamin K. Many medications like antibiotics and steroids can affect INR results.
I was put on steroids and ended up having weekly blood tests.
Trust me, being on warfarin can become very inconvenient and miserable.
There is, however, a plus side in that Vitamin k can be given to reverse its effects if you have a bleed.
My CHADvasc score is only 1 because I’m a woman 🤷🏼♀️
I went to the nurse for an ECG on their equipment, I have a Kardia that’s really good. She went on at me because I’m not on an anticoagulant. My Consultant cardiologist said I don’t need one as I’m more at risk of the anticoagulant. She was just OTT, I’d told her about Consultant and she said ‘well, I’ll have to talk to the dr!’
I spoke to my Consultant who wrote the Practice dr.
Why are they like this, who knows, seem to me they need to do CPD and educate themselves about the dangers of anticoagulants.
Money.
I noted what someone wrote above about being kicked off the forum so have refrained from responding, but thanks.
I believe they’re in with the big pharmaceuticals to push anything that has been approved by the medical authorities. Along with corrupt media spin. I don’t disagree with taking medication that gives relief to people, as I’ve taken insulin for 44 plus years and like most illnesses there is a cure and they know it, they’re just not letting us get back to 100% health.
Hi I'm 60 chads score 0 my ep told me I'd be on anticoags at 65 sometimes I think I should be on them now and will soon see go about this but I find myself thinking about the average age for dying is i think for men 74 so say I have if I'm lucky another 14 years left which is very short I think well I don't want anything to upset that 14 years this is my thinking when trying to decide wether or not take meds and anticoags don't mean to be morbid just facing that reality when we are healthy we think nothing will ever upset us then one day we develope some ailment and everything changes suddenly we are faced with things we thought we would never experience such is life I think if anticoags psychologically helped then that's a bonus to help relieve stress good luck
merci beaucoup. (Can't repeat the same words or z bot blocks me)
Surprising when it an expensive drug.
I went to see my ep at Coventry the other day he said don’t bother with them till I’m 65 a least
I am 73 going on 74, and just like you, I am refusing to take blood thinners. I have to take too many tablets already. My score last time was 2. If it gets much higher, or if I get to the stage where I have a lot more physical difficulties (can't ride the bike or walk in the park), or if I make it to my 80s, I will probably take them then.
I recently had a bit of an AF episode due to some medicine I took (didn't know it caused that problem), and because I still have some Apixaban, I took it for a couple of days, just in case. But carrying a card around that essentially says I am about to bleed to death if I fall over -- I can't guarantee that people will even look for the card when they phone emergency, so what's the point?
If I get to 74, another 8 years, without meds I'll feel I'm not doing too badly!
just to say thank you to everyone who responded. I am overwhelmed. Everyone is helpful, nobody is judgemental, everyone is sympathetic and I feel very supported. Lots of good ideas and food for thought. Thank you everyone.
I've just decided that I will take the Apixaban for the time being. The reason for this is that I want to avoid being in a situation where I have to go to hospital for any reason while the NHS is so overwhelmed by Covid!
That's sound reasoning.
The posts have been interesting. Dr. Sanja Gupta at York Cardiology did a post on anticoagulants some time ago and he had trouble finding studies that verified the risk of stroke, if you have AF. Maybe there are new studies since then. My EP told me the stroke risk increases by 1% and the bleed risk from DOAC's is 4%. Where he got these numbers, I don't know. Stroke risk might be increased by AF medications, blood pressure tablets, etc. One doctor, I read, said blood pressure tablets increase stroke risk from a low of 35% to a high of 275%. Kind of ironical. Likely the more meds you take the more difficult it is to know your stroke risk. The blood platelet factor is real. Pulsed electromagnetic fields will prevent platelet's sticking together, called the Rouleaux Effect. They also help with blood vessel health. Effects and side effects of anything we ingest, plus our lifestyle, makes it difficult to know in each individual case. Instead of the Rouleaux effect it is the roulette effect we are trying to gauge. Most people depend on their doctor's advice and then they don't have indecision.
I resisted anticoagulants for over a year after being diagnosed with paraxsamal? afib but I started taking Dabigatran after finding that I had gone into persistent afib. This is because if you have been in afib constantly for some time blood clots can build up in your heart and they won't carry out cardioversion until you have been anticoagulated for at least 4 weeks to dissolve the clots. They are right because I had a TIA before the anticoagulant had a chance to work. I woke up one morning and I couldn't lift my left arm for about 5 minutes. Scared me to death. If you go into long term afib you need to take the pills.
Ivan_the_Terrible• in reply to
Thank you. I am finding numbness in my extremities and this morning was concerned enough to take Rivaroxaban. But it sounds as though I'd have to keep it up for a while. There's nobody to look after me in the event of a TIA.
• in reply toIvan_the_Terrible
The numbness sounds like a side effect from medication, you should ask your GP
Ivan_the_Terrible• in reply to
Thanks, I have. It's not so bad today.
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