I would like to hear from people with Afib ... - AF Association

AF Association

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I would like to hear from people with Afib who decided against taking anticoagulants.

Slattery
Slattery

Please tell me why you are not taking anticoagulants if you do not have a bleeding problem. I am a Chad score 2 because I am a female and 69 years old. I do not want to take anticoagulants at this time as the medical community has different opinions on anticoagulants, that change every year.

74 Replies
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BobD
BobDVolunteer

Not sure they do Slattery . Why do you say that?

Becksagogo
Becksagogo in reply to BobD

Bob hello. Please can you explain what a Chad score is. I am in permanent afib but nobody has spoken to me about this. I do take Rivaroxiban and am 62 almost.

What's your objection? Is it anticoagulants as a whole or is it one in particular?

I refused Warfarin when 66 with a Chad score of 3. I didn't feel (probably wrongly) that I was at risk, was concerned about hair loss and had no wish to take such pernickety medication with its frequent surgery visits. I thought the new anticoagulants sounded really scary and they were, at the time, not recommended by my GP practice.

I didn't find it easy to go against medical opinion, and was spoken to severely by various GPs, and sundry relatives.

It would be a brave person who admitted to not taking anticoagulants on this forum! As someone recently pointed out, the argument against them is that the means of assessing individual bleed risk is not sufficiently fine-tuned.

Although "change every year" is a bit of an exaggeration, medical opinion does change. I was on aspirin for years and no one thought it necessary to prescribe anticoagulants. I went on to warfarin as a "temporary measure" post heart operation and the GP was then happy to put me back on aspirin. This was 5 years ago but the cardiologist insisted on proper anticoagulation.

My dilemma was with warfarin, which I hated for the reasons given by Rellim. I didn't find the new anticoagulants scary but, had they been unavailable, I would have been sorely tempted to stick with aspirin.

BobD
BobDVolunteer in reply to Mrspat

But as we know, aspirin is not an anticoagulant it is an anti-platelet which is quite different so doesn't come into this discussion. NICE withdrew recommendation for aspirin as a prophylactic against stroke in 2014. It still has many valuable uses in other heart related matters as well as use post stroke or with coronary artery problems, just not as a stroke preventing medicine. I can think of no other change in medical opinion in the last ten years when the link between stroke and AF was first heavily pushed.

Rellim296
Rellim296 in reply to Mrspat

I take Rivaroxaban now and don't find it scary at all. But when all was new, it was impressed upon me that a stroke was almost certainly about to happen. I felt a haemorrhage was more likely and a bleed, spontaneous or accidental (and exacerbated by the anticoagulation) would finish me off in no time. I felt moribund and not the least bit safe. There seemed no good way forward.

OldSarge
OldSarge in reply to Mrspat

I had a major bleeding incident, lost 13 pints before they got it under control. One of the reasons was I was on thinners. Since then I have been on aspirin alone, I tried Zarelto a few months back and had internal bleeding. I know because I have Afib I need to be on something more than aspirin but I am fearful of the bleeding. Will be speaking to EP (soon, I hope) about this.

Hidden
Hidden

Not sure opinion changes really. Most here take them including me. So sorry I can't answer. Hope your reading scholarly articles to inform your decision?

Hidden
Hidden in reply to Hidden

A lot of people are asymptomatic so may not be aware if AF reappears.

Hidden
Hidden

Must say that I wasn't aware of medical opinions changing on the need for anticoagulants .

As one who has had to undergo many ' emergency' dccv s I don't know how I would have coped without already being on anticoagulants. (Chads 2)

Sandra

I am not taking anticoagulants because all of the various scores came out at 0 for me. Although I also get 0 for bleed risk as well.

I expect to take them at some point in the future tho.

Hidden
Hidden

Not sure opinion changes really. Most here take them including me. So sorry I can't answer. Hope your reading scholarly articles to inform your decision?

I resisted taking them, then found the evidence absolutely overwhelming for taking them - I also score 2 for being female and 65+.

As Bob often says - you can't undo a stroke - and when AF returned after several years free of it - my one and only concern was - hell I'm not anti-coagulated.

Read the literature.

Can of worms.....

I wouldn't feel safe in your situation . I take apixiban twice a day and it's no bother at all. The risk of stroke is too high not to take an anticoagulant .

I was not keen on taking them at all. I was on Apixabahn and bruised easily and bled for Britain with any tiny cut. Fortunately as my a fib attacks (2) did not return after 6 months I was able to stop taking it. I understand completely how you feel but if stroke risk is high then you must take them. I wonder if such a high dose of Apixaban was necessary fir me as I'm very small and light weight. I always worry that a One size fits all approach to meds is right Good luck. Really you have to do what you think is right fir you.

lallym
lallym in reply to Elaine1951

A lower dose is advised for smaller people. Can't remember the weight limit. Also for over 80s

RexH
RexH in reply to Elaine1951

I agree, I am not very heavy, and so I only take predaxa once a day in the evening. One size should not fit all.

Hi

I've had conflicting advice from various professionals. GP said don't take them as score was finely balanced against risk of bleed and risk of stroke. Cardiologist agreed until last year when I believe guidance changed so advised to take them. GP wouldn't prescribe Until cardiologist wrote to him... saw a different cardiologist earlier this morning month in another part of the country to join a trial and he said grey area with my score and recommended I stop taking them. GP surgery called yesterday to say they wouldn't prescribe any more without any discussion!

My view-ask enough people and you'll get different answers which isn't reassuring!

Anticoagulant or stroke who would want to risk not being able to speak or move having to have some one wipe your bum feed you wash you

ANTICOAGULANT for me

Phaedra
Phaedra in reply to Mazza23

Just want to say- since my ablation 2 years ago my AF has gone.

At my first follow up appt the consultant said I could come off Warfarin, so I did and have not taken anything since, on the basis that I don't have AF, which I understand is the risk factor for stroke.

I was offered Amarodione at one stage before the op, but after reading the leaflet said " thanks but no thanks"

Sorry to be blunt, but if you've been advised to take anti coagulants and you've chosen to ignore medical advice, I hope you won't be looking to our overstretched NHS for rescue when you have a major stroke.

I have been told by 2 cardiologists I don't need to take anticoagulants as I only score 1 for being female and by 2 cardiologists who say that the chads2vasc score is only for people with permanent afib not for people with paroxysmal afib as, according to them, paroxysmal afib carries a higher risk. I can't find anything anywhere to support the latter view and a lot, including some of the latest trials, to support the former. So currently not taking anticoagulant until benefits outweigh risk. There​ is still a lot the medical profession don't know about afib as it's known connection with strokes is relatively recent. As more research into afib is being carried out into fine tuning its exact role in the incidence of stroke and these results are published ideas may well change to take these findings into account. At the moment we only have chads2vasc but it's your choice and no one should make you take them if you don't want to.

BobD
BobDVolunteer in reply to Jans5

That's the trouble with talking to cardiologists they really are not experts in arrhythmias. Only EPs have the knowledge and training.

LuciaBB
LuciaBB in reply to BobD

What's an EP?

BobD
BobDVolunteer in reply to LuciaBB

Electrophysiologist. An expert in arrhythmias or to put is another way an electrician to the cardiologists plumber. Would you get a plumber to re-wire your house? I think not. Case rested.

Jans5
Jans5 in reply to BobD

Unfortunately unless people join this site your very lucky to even know what an EP is let alone get referred to one. After my diagnosis at hospital I was discharged with no medication. Six months later my doctor organised a 24hr monitor and an echo cardiogram as he thought I should have had one when I was at hospital and also referred me to a cardiologist. Flecainide pip if symptoms bothered me. Chads2vasc score taken into account so no anticoagulants. Having done a lot of research I am happy with this, symptoms don't bother me as I sleep through most of it! However what concerns me is if I had only gone to see either of the other two cardiologists I would now be taking at least 100mg flecainide tablets 365 days a year to manage the 9/10 attacks a year and increasing my bleed risk above my stroke risk by taking anticoagulants. At no time did either my doctor or the cardiologists mention an EP or what one was. When I asked one of the cardiologists and my doctor to be referred to one their response was that you were only referred to one of you were thinking of an ablation and that they would not recommend one at this stage. It appears that some people get excellent advice and accurate treatment and others are left trying to figure it out for themselves. Oh and I've now been discharged so will only be seeing my doctor from now on.

Hidden
Hidden in reply to Jans5

I wish you well but if you can sleep through AF how do you know when happening. May be more than you think.

Jans5
Jans5 in reply to Hidden

My afib comes on a couple of hours after I've been asleep and always wakes me up. It is always still there when I wake up but goes after a few minutes when I get up. Now I have gotten used to the attacks I am able to calm myself down and go back to sleep in spite of the ferrets bouncing around in my chest no matter what position I lie in. If i was getting episodes that weren't waking me up at night I would expect to wake up in the morning in afib sometimes but I don't so I'm fairly happy that I'm not getting episodes I don't know about.

Hidden
Hidden in reply to Jans5

That's good I was treated for two years with stress until an ECG showed AF which was permanent. It took two and a half years of tests and treatment post diagnosis to where I am now anticoags all the way through. Had tumour removed from my heart as well as cox maze procedure at same time. I now have a pacemaker and take meds to keep my heart in some kind of order. Still wouldn't come off anticoagulants my life is so much better now. It's my choice and your decision is your choice. Just make sure it's an informed choice

Jans5
Jans5 in reply to Hidden

The different information I've been given the medical profession has made me look elsewhere to get reliable information and I'm happy now with my course of action. Of course it's the nature of the beast that things will change as I get older or if I develop comorbidities but I'll deal with that when it happens. Currently I'm concentrating on lifestyle changes in the hope of preventing or at least delaying any comorbidities obviously can't do anything about aging.

Hidden
Hidden in reply to Jans5

I always went to gym and after five years I now can go again 5-6 days a week. I'm an otherwise healthy 62 year old. I've read many scholarly articles and was a senior nursing sister so have made my decision on the reading and experience in cardiac nursing

Jans5
Jans5 in reply to Hidden

So glad you've managed to get your life back to some normality, I hope it stays that way for a long time.

Hidden
Hidden in reply to Jans5

Keep well

SandiBee
SandiBee in reply to Jans5

Very nice to read your contribution. I too have been diagnosed with paroxysmal atrial fibrillation and have few episodes and recently discovered that cardiologists don't seem to know much about this intermittent electrical fault (when I finally got to see one at my request five months after the original diagnosis). My heart behaved perfectly when given an echocardiogram as when I saw the cardiologist. I agreed to take the anticoagulants but at a reduced rate as I am female and only a little over the weight when half the dose is recommended (agreed by my doctor and not the cardiologist). I only get to score 2 being female and over 65 anyway. As I have always been fit and healthy up until this, the shock is the worst thing. At first a doctor at my surgery prescribed rivaroxiban and a beta blocker to be taken daily but the lowest dose (1.25mg) was too much for me as it brought my heartbeat down too low so now they say to only take one when I get an episode but the last time that happened my heartbeat was around 50 so I didn't take one and the episode ended on its own. I find it odd that I was told to take it in this way when the information that comes with the medication only specifies that it should be taken regularly!

Some time doctors will realise that we are all different and consider treating us appropriately as individuals. I had stopped taking the anticoagulants after the first lot upset my stomach but I know people who have had strokes and the apixoban is better but I do wonder what effect it is having on me as I do get tired.

The cardiologist said he would arrange for me to have a blood flow test but did not say when. Has anyone else had one or know what it is supposed to determine?

Alan_G
Alan_G in reply to Jans5

You said "the chads2vasc score is only for people with permanent afib not for people with paroxysmal afib as, according to them, paroxysmal afib carries a higher risk"

I don't understand this. You are saying the that the chads2vasc score is only for people with permanent afib, yet then go onto say paroxysmal afib carries a greater risk! Surely, in that case then, the chads2vasdc score would be even more relevant to paroxysmal afib. Confused.

Jans5
Jans5 in reply to Alan_G

I think you may have misunderstood me post. Can I first clarify that I didn't say what you quoted. What you quoted was what 2 of the cardiologists I saw told me and by no means what I think. I'll try and clarify, they (the cardiologists) said chads2vasc score was not for people with paroxysmal afib as the stroke rate for them is higher ie even higher than the chads2vasc score states. Therefore according to them even though currently according to the chads2vasc score I shouldn't be taking anticoagulants because my risk is low, that because my afib is paroxysmal I should be on anticoagulants. If your confused imagine how I feel sat in front of four different cardiologists two of which are telling me completely different things!! I hope this clears it up.

Alan_G
Alan_G in reply to Jans5

Yes, it does thank you. My GP took the opposite stance saying that because I was paroxysmal and my episodes are very infrequent, then he recommended I didn't consider ACs for the time being. He said if I became permanent, then his opinion on that would change.

KathFrances
KathFrances in reply to Jans5

This is the opposite of what I've read (see a later post), which is that the stroke risk for paroxysmal AF is about half of the risk for people with permanent AF.

NJ47
NJ47 in reply to Jans5

I take Rivaroxaban because I don't have to worry about INR levels and don't fancy playing Russian Roulette :-)

My friend was told she did not need anticoagulant as her score was low she had a major stroke left unable to speak or move left side This was enough for me to decide to take it even so I had a slight stroke a few months ago no lasting effects thank goodness what the outcome would have been had I not been anti coagulated I will never know ,

Ok. I was prescribed aspirin before it was outlawed and was on it for 2 years when an episode of af in landed me in hospital. Cons said advice had changed and to discuss warfarin with GP. ( NOACS , now called DOACs I believe, were in their infancy) I was overjoyed to be told this and happily take warfarin. Surgery within walking distance on a good day. They use Coaguchek and you can book any time if concerned but I have had 2 x10 week gaps lately so not really a nuisance..

I can think of no reason to "decide" against them for me, we need all the help we can get to stay well.

I will repeat my post of a few days ago. My understanding based on CHADS =

0 = Optional - so opinion will be divided and personal.

1= Advised - but some wriggle room

2+ = Strongly recommended as increased risk

All based on herd statistics so there are no absolutes and therefore will be a choice - by the doctors but also by you.

But the statistics are very persuasive.

Patricia52
Patricia52 in reply to CDreamer

I have only had 2 prolonged episodes of AF in 4 years and my chads score is 2, 65 and female and have been sternly advised to take anti coagulants. Could not make my mind up so have done lots of research and asked for advice on here and from doctors and come to the conclusion that my risk of a stroke is far higher than a bleed so am starting them tomorrow. Hope I have made the right choice.

Hidden
Hidden

You do have a choice - we are given advise and then its our decision to take it.

I have PAF, related to thyroid issues, and no other cardiovascular problems. I'm CHADS score 2 (female, aged 66) so my GP prescribed Xarelto 'to be cautious'. But on ATRIA I score 4, which is low (0-5) and the suggestion is not to anti-coagulate. The HASBLED score doesn't seem to make sense. I have been researching NOACs, Warfarin, other alternatives and watching Sanjay Gupta's videos. I'm currently taking nattokinase, fish oil and turmeric, but not the Xarelto. I took one, felt absolutely awful, like I'd been poisoned, and came off it by taking half next day, then a quarter and a quarter. I'm waiting for a cardiologist appointment to look at what best to do. I'm put off Warfarin due to the side effects (e.g. bleeding, hardening arteries) and NOACs because of side effects (re internal bleeding there are over 4,000 lawsuits currently pending plus a class action in Canada), the inability to measure their anticoagulation effect and the lack of antidote. I also can't find a measure of the effectiveness of nattokinase etc, so with NOACs versus nattokinase etc I feel damned either way. If taking 10mg of Xarelto would have sufficient anticoagulation effect, with lower risk of side effects, I might consider it, because with prescribed medications I often find that I need half the normal dose to achieve the desired result. But with Xarelto, who knows, because . . . there's no way of measuring it! So I'll continue researching, talk to the cardiologist and see what seems best - but so far, no clear or easy answers for me.

I am 63 years old female with afib

I do not take anticoagulants, however when I have an episode I take lycopene or nattokinase...

I also take fish oIl most days and tumeric/curcumin regularly

patty119
patty119 in reply to Talika

Hi.how much nattoKinase or lycopene do you take

Talika
Talika in reply to patty119

These days as I do not have much of a problem with af - not like before.

I would Take it if I had an episode or I was flying… However before when I was a lot worse I would take it as recommended...

All the best of the best

Another point is that the stroke risk for permanent and paroxysmal AF are very different:

Permanent atrial fibrillation doubles risk of stroke compared to paroxysmal AF

Date:

September 1, 2014

Source:

European Society of Cardiology

Summary:

Permanent atrial fibrillation (AF) doubles the risk of stroke compared to paroxysmal AF, according to new research in more than 6,000 patients. The findings suggest that a simple clinical assessment of the type of AF can help doctors to better estimate stroke risk.

I have had awful side effects with this type of medication,tried different ones but just cannot tolerate any of them,SO I don't take any. I have AF am 74. My mum had a stroke so I am told I am a candidate for one. They say if medication makes you worse then it's not for you. If I have a stroke my gp says I have 90 mins to get to A&E. I just live with the fact I don't take anything. Do hope that helps

Hi

I dont take anticougulants or what the health professionals call it to the lay person "blood thinners" i must be carful as this word seems for some reason. To upset people 😳

As a health proffesional myself firstly i want to say i do totally undertand why some people feel thay want to take them

For many years i have witnessed poeple having major bleeds that cannot be reversed

I also have worked side by side doctors for 15 years in A & E

Becuase i am a person who thinks and reflects for myself i do not need to follow other people because someone told its okay and then only to find out years later they were wrong

The health professionals do not know enough about afib

There are tons of people not on meds and no stroke

They are many who have strokes And do not have afib my hospital is also a stroke unit and therefore we see many strokes on a daily basic coming into a& e before neruo comes down to see them

As for research i m sorry i trust my own judgment

research papers can be biased and fake

I go with seeing and making my own decisions there are many other reason which will be too political for this site

I respect peoples decision like i expect people to do likewise without harse words and sarcastic remarks

🌺

Hidden
Hidden in reply to Jamila123

Hi Jamila. I was very interested in your comments re 'blood thinners' because our philosophies seem very much on the same page. I am a 73 y.o. retired RN in the states. Will skip all the details of my afib journey-many are elsewhere on this site-except to say that I've had many med side effects since 2011 dx and at this point I am off all cardiac drugs as a result of choosing to have an AV node ablation with pacemaker in 2014. This has worked well for me. For the past 2 years I have been on Coumadin and self-tested weekly at home. However, I wanted off the Coumadin (and indeed all AC's) so chose to have a Watchman Procedure which was done a week and a half ago. Very happy. Do you have any dietary advice to help avoid clots? The older I get the less I trust most drugs-esp living in the US where prescription drugs and their prices are king. I was told this procedure is done as research shows 90% + or - of AF clots originate in the Left Atrial Appendage.Which begs the question where do the other 10% begin. I'd like to help lower that % with food if possible. Am researching but not a lot of info out there. Thanks, irina1975 PS I also think for myself and my 'be my own advocate' position creates a lot of 'medical skirmishes' for me.

Hi All,

Im new to this platform. There are a lot of conflicting opinions out there regarding risk v reward with anticoagulant therapy and a lot of the risk assessment can be done with objective measures .

I have familial Af with associated cardiomyopathy, my father and brother , all emerging > 50 years . Both my brother and I have different approaches as we differ slightly he has permanent and I paroxysmal . Both of us are anti coagulated using NOACS , we both have low CHADS VASC , with low HASBLED scores the choice to AC was open to discussion and not compelling .

To anticoagulate in AF reduces the ischaemic risk more or less to background risk, whilst increasing the bleed risk and risk of bleeding in the brain above normal. Thats why the HASBLED score is important as it measures this risk.

ALL forms of AF significantly increases the risk of clots forming in the LA, it is then in the lap of the gods as whether the clot moves and travels to the brain . If anticoags did not increase bleed risk then everyone with AF would probably be advised to be anti coagulated. It is this that more or less drives the NICE opinion to anticoagulate in AF.

It is the bleed risk that throws this argument out of balance and is why most GPs do not like to Rx anticoags .

For me , the choice was simple , I have an elevated ischaemic stroke risk which justifies intervention and therefore I wish to be anticoaguated with an AC that significantly reduces this risk , whilst only introducing the lowest bleed risk . This means evaluating the doses and the evidence for each dose in both these regards.

The AF risk of Stroke is significant whilst the bleed risk with an AC is variable , it is therefore down to discussion to come up with the best solution in balancing out risk v reward.

All medical intervention in this area comes with a measure of risk v reward , even the physical interventions around ablation and maze. It ,is for a two sided discussion to come to a balanced conclusion as to which is best for the individual patient

To decide to go without anticoagulation in AF, is for me , too risky!

I am 66 and have Paroysmal AF, normally induced with intense exercise (cycling) which I have lived with for 15+ years, which was observable due to high pulse rates (typically 170 - 200+) but I did not recognise this was actually AF. I am only aware of two, non exercise induced, short episodes otherwise in the last 6 months.

On referral to a Consultant he warned against extreme exercise, and, long story - short; recommended Rivaroxaban for stroke prevention, to be prescribed by my GP. At my GP appointment I was given the choice of Rivaroxaban or Warfarin, subject to satisfactory blood tests (OK). I raised concerns about side effects and was left to think about it. 6 months later I am still thinking about it. I know I may be playing Russian Roulette, but believe my risk is low. Low CHADS-VASC score and no co-morbidities.

I have an aversion to taking any medication, which in my opinion are often to treat the symptoms rather than the cause of illnesses.

Researching information on-line I came across the following guidelines for prescribing NOACs :-

westsuffolkccg.nhs.uk/wp-co...

West Suffolk appear to have (in 2013) a strict policy on prescribing NOACs. In my experience none of these criteria were taken into consideration. I do have some stomach / digestive / (& liver ?) issues which I mentioned to my GP. He said that I may also need to take a PPI (Proton Pump Inhibitor - sounds fearsome) also. Well, this really rang alarm bells and put me off even more.

Listening to Dr Sanjay Gupta on his excellent videos posted on this forum, he too questions the need for AC's in low risk patients with no co-morbidities. Also, his explanation of stroke risk associated with AF in percentage terms puts things in perspective.

Currently I am still undecided, but leaning towards Warfarin if anything. Personally I'd prefer to avoid any medication, but would hate to endure the potential consequences of a stroke and its effect on other people.

RoyM
RoyM in reply to BuckleyBoy

Two excellent posts...I think it is fair to say that non of us actually enjoy taking medication and most people have an aversion to taking tablets but sometimes the possible consequences of not conquering our natural aversion to medications CAN be catastrophic.

Two doctors in the US who are asking excellent questions about the use of anticoagulants are both highly regarded Electrophsiology. They will educate you on anticoagulants and if you should consider another path. Dr. John Day and Dr. John Mandrola. Take a look at their blogs on the internet. I have decided not to take anticoagulants for now after reading their articles. Dr. John Mandrola has an excellent article called " 4 questions to ask your doctor about anticoagulants "

I was 67 earlier this month and have paroxysmal afib with no co-morbidities, but am not taking any medication at present. I am working hard to reduce the frequency of afib incidents by improving my diet, and reduce their duration by various techniques, eg, stretching upwards. Afib does not really affect me. I have read many posts on this forum, and am aware of the arguments for and against medication. An additional one according to my understanding is that anticoagulants do not prevent strokes; they reduce the risk, maybe by about 60% on the average. There is then a significant residual risk of about 40%.

Slattery,

I posted this a while back in this forum, re-pasted here.

FYI - I've been on this formula coming up in September will make 2 years.

I had some of that worry as well. They put me on "The Warfarin rat poison." Helped but barely could trudge across the office on it. I'm a natural herbal type of guy so I did research and I'm off Warfarin and "on" Nattokinase 2400 (1/day), Tumeric 1046mg (1/day), Vitamin "E" 400 IU (2 each/day). Seems to be working. I also eat 1 garlic clove/day.

All of these thin the blood but of course are not the recommended method and can't be measured like Warfain INR. I Can tell you that it takes longer for my blood to clot when I cut myself, but still clots reasonably fast. I'd say it takes about 3 times the normal time to setup as b4 taking all of these. I take the Nattokinase because it is proven clinically to actually DISSOLVE clots as well as help prevent them.

1 of the many links you can find and read about natokinase healthunlocked.com/api/redi...

Nattokinase is a potent fibrinolytic (anti-clotting) enzyme complex extracted and highly purified from a traditional Japanese food called Natto. Natto is a fermented cheese-like food that has been used in Japanese culture for more than 1,000 years for its popular taste, and as a folk remedy for heart and vascular diseases. Research has shown that Nattokinase supports the body in breaking up and dissolving the unhealthy coagulation of blood. In fact, it has been shown to have four times greater fibrinolytic activity than plasmin.4

healthunlocked.com/api/redi...

Slattery
Slattery in reply to Solarjdp69

Thank you so Much for this information, I will give Nattokinase a try.

Very interesting comments. I am two weeks post ablation, doing well and taking apixaban, a factor Xa inhibitor.

Here is a different way to think about factor Xa anticoagulants. As you know, AF leads to remodeling of the heart tissue including fibrosis. (Not good). I have seen lab evidence in animal models that the Xa inhibitors reverse the remodeling. This result was presented at an EP conference sponsored by the University of California last year.

While the main reason for taking Apixaban in my case is mitigation of stroke risk, there is a chance that it is also helpful with remodeling in my heart. Note today this is only speculation on my part but further research may validate the notion.

Stay tuned.

It really is no wonder that stroke takes away so many people. Those with AF should know better - others have no reason to protect themselves as we do. But there will always be those who know better of course. It's such a shame....

Hi,

I have taken warfarin for 10+ years and I'm 62 female with a Chad score of 1 and chronic Atrial Fibrillation. I can tell you that I have grappled with having to take blood thinners for so long, until I read some research identifying that AF can lead to dementia. The research strongly advocated the need for immediate blood thinners to prevent the bursting of small blood vessels in the brain - these are inperceptable but can cause cognitive decline as we age. While there is much research related to the pooling of blood and risk of stroke, it is worthwhile exploring the connection with dementia. I hate the idea of taking Warfarin but have to say, I never had any problems - no bleeding, no bruising or any issues. I prefer that I can monitor the levels (unlike the new agents) and that there is an antidote available. My mother is on Apixaban and has continual nose bleeds and vision problems. In closing, you can still have a quality life with AF and blood thinners but dementia frightens me. Good luck, Jules

Anti-coagulation is wonderful once you've found the right anti-coagulant. Yes, testing can be a pain, but I've only had to go to my local medical centre once in the last year to be tested. To start with I didn't get a stable INR taking warfarin, and a rash I had was put down to warfarin (later discovered that it was a BP drug). My very knowledgeable GP put me on Rivaroxaban, which caused an adverse reaction. After 12 days I was taken off and offered other NOACs but decided to go back to warfarin. I bought my own Coaguchek INR tester, and now I receive an email from the Coagulation nurse asking for my INR. I test myself and reply by email. There are now schemes , as in Darlington, UK, where the Clinical Commissioning Group buy Coaguchek testers for their patients. nhshealthcall.co.uk/resourc...

Having one is good for peace of mind, as you can test yourself whenever you want.

Would like an answer to the same question. Am 81 & said to have enlarged left & right atria. Put on anticoagulant & diltiazem & stopped taking them after 8 mo. Too many bruises & feeling tense. Am taking D-Ribose, acetyl L- Carnitine, & 4,000 mg VitC. Is there any test to show your atria has become normal again.

Hi Slattery, I have just recently joined this group and I am really enjoying it.

I was diagnosed with AF several months ago following a TIA which landed me in hospital.

The Doctor’s want me to take Warfarin but I am resisting this because I suffered a major double Brain Heamorrhage back in 1994 which has left me with some deficits. I have also had further bleeding issues during and post surgery on several other occasions. They chose Warfarin because they say it is reversible if I am involved in an accident or during a surgical procedure. I cannot face this as my medical issues almost consume my life now, without the added complication and risk of taking Warfarin . The Doctors are not always very understanding.

I am looking at other options at the moment.

I would be glad of any help from anyone in this group that may have had to face these challenges or similar.

Thanking you

Glenys

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Hello Slattery. Boy do I have a lot to say on this subject so get comfortable. This is my first post on this community (my main one is restless leg syndrome). I am a 73 y.o. retired female RN in the US and have recently begun to feel that Coumadin is making my rls worse. Was diagnosed with afib in 2011 after a sleep study and cardioversion worked for 2 years. Then had another episode. After trying 2nd cardioversion, rate and rhythm drugs, and Pradaxa my diagnosis changed to permanent afib probably thyroid related. Was started on Coumadin-my choice- because I felt safer being able to check my own INR's at home weekly and working with the Electrophysiologists's coumadin nurse to adjust dose on a weekly basis. This worked well for a while but in the last year have begun to have side effects that worried me. BTW had problems with side effects with cardiac rate-control drugs. In November 2016 I chose to have a pacemaker insertion and AV node ablation and was able to get off all cardiac drugs except coumadin. The pacemaker and ablation have worked well and if I had known how much better I would feel I would have done it sooner. To jump ahead, because of more and more research becoming available about anticoagulants (including increased chance of dementia down the road) I began looking for other solutions-which brings me to the reason for this lengthy post. Several years ago a procedure was approved known (in the states) as the Watchman Procedure. It is being done in many other parts of the world-sometimes under another name. It is called Watchman because that is the name of the device in the US. When I was researching this I actually watched 2 videos on the internet for a better understanding of what was involved. One video was made at Hammersmith Hospital in London and the second was done in Germany. Electrophysiologists (not regular cardiologists) are the ones to talk to about this. Not everyone is a candidate-it depends on individual reasons for needing anticoagulants. Fortunately for me I have turned out to be a candidate and I am scheduled for the procedure this coming January 15th, 2018 here in Atlanta GA at Piedmont Hospital. There are better explanations than mine. But I will try.The procedure enables a patient to get off of coumadin and other anticoagulants. Apparently research has discovered that about 90% of a-fib related blood clots originate in a section of the heart called the Left Atrial Appendage (LAA), By inserting a small device through cardiac catheterization this appendage opening is sealed off from the atrium enabling weaning off medication when the area has closed and healed.There is a lot of info online for anyone interested.Again, not every patient is a candidate and the procedure is done by a specially trained Electrophysiologist. I've given much thought before deciding to opt for this and will post my progress post op. (starting Jan16th). Won't be so long-winded but I didn't see any other info so wanted to share. Yes,strokes are terrible but much brain damage can also result from anticoagulants. I've come to feel that coumadin and other similar drugs can be very harsh. Medical thinking sometimes changes slowly. There was a small 'medical skirmish' involved getting my point across with some but I have no problem being my own advocate. Also anticoagulants are a big income source for pharma companies (tryingto be politically correct here) so this may be part of the resistance to newer options. Hope I've shared some food for thought here. Please let meknow if I can help. Thanks for reading my novelette. irina1975 PS I was an Operating Room nurse for years and for google purpose before the device was invented, this procedure was known as the Lariat Procedure where the appendage was tied off. This required an incision whereas the newer current procedure can be completely done with cardiac catheters under general anesthesia.

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This is an interesting view. Hearing about LAA occlusion perked me up considerably when I attended Patients' Day here in the UK a few years ago because I have taken an anticoagulant with great reluctance. I was petrified for months, irrationally convinced that I'd have a fatal haemorrhage. I found Warfarin / Coumadin very difficult, disliking a medication that had to be checked frequently to see if it wasn't working and was ecstatic (and remain so) to move to the simplicity of a new anticoagulant. I'm now somewhat irrationally convinced - and indeed very hopeful - that I won't live long enough for numerous little bleeds to have a detrimental effect on my brain.

My EP rather poured cold water on LAAO when I mentioned it and I've since gained the impression that it has not been gathering the momentum it promised a while back.

For those with other issues to consider and for whom anticoagulation is unsuitable it sounds a wonderful solution, though something of a sledgehammer to crack a nut if one just doesn't like taking medication.

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You have a point. No one should consider surgery lightly. I researched long and hard and had 2 consults with electrophysiologist before making my decision to go ahead. I have had quite a few very uncomfortable side effects-not bleeding- from the coumadin. Patients feel differently about which anticoagulant is best for them. I chose coumadin because I did like the testing as it enabled me to keep my INR window (between 2,0 and 3,0 tightly controlled. I do my own tests at home and I do them weekly. I am a retired nurse and try to hang onto as much control over my own medical destiny as possible. But you don't need to be a nurse or have any medical background to self-test. Just a doctor that believes in it (and possibly doesn't mind losing the revenue that office testing brings in)(Probably not a very politically correct opinion but at least in my opinion here in the US sometimes revenue is king). Back to test. Self testing is notmuch different than testing your blood sugar, A small machine/test strips/lancets etc. A nurse practitioner from my doctor's office came to my house to teachme when I started-took about an hour. This also allows me to not worry so much about eating too many greens and salads. You report your results to a coumadin clinic nurse in your doctor's office whenever you test and the 2 of you decide your dosage/day til your next test, I would be interested to know why a doctor didn't think this was such a good idea. We're all different and he may have valid reasons for this not being a solution for you. But I would certainly want to know why. Also it's not very expensive!! Hope I've given some food forthought. irina1975

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Hi Rellim2. Sorry, I got off track about the Watchman Procedure and got wrapped up in the coumadin. The same thing applies. Before a doctor takes away possible chances for me to improve my quality of life I would like for him/her to be very clear re facts etc why he doesn't think a solution would work for me. For me, vague answers are dismissive. Facts and discussions I can accept if opinions differ and things don;t go my way. It's easy for me to say this; I was a nurse for 40 years and am not intimidated by doctors. But I know sometimes they can be quite authoritative. irina1975

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Self testing on Coumadin / Warfarin is now getting well supported in the UK I think, although self management may not be! I might have done better had I gone down those routes but I am happier to have a hassle free existence.

LAA occlusion is not a procedure my EP undertakes and I think it's cost rather than unsuitability, although as I said it seems not to be gaining popularity. It does not get funded by our health service in the UK unless anticoagulation is not suitable for a patient at serious risk.

Hello Irina :-) while LLA may be a better alternative to ACs and even cost effective I can't see it being on offer to many here unless a person seeks to have the procedure done privately.

There is something here in the UK called N.I.C.E which lays down guidelines and a 'pathway' on how to treat specific conditions and it actually states this in relation to the treatment of AF..

[Quote= Do not offer LAAO (left atrial appendage occlusion) as an alternative to anticoagulation unless anticoagulation is contraindicated or not tolerated.

nice.org.uk/donotdo/do-not-... ]

In one note on their website N.I.C.E links to this recent recent study related to LLA...

[Quote = ncbi.nlm.nih.gov/pubmed/282...

CONCLUSIONS:

LAA occlusion appears to preserve the benefits of OAC therapy for stroke prevention in patients with AF, but the current evidence is of low quality.]

.....It is difficult enough for some of us to get to see a cardiologist (let alone an electrocardiologist ) in the first place to discuss our condition, much seems to depend on where you live. So unless N.I.C.E changes its stance and more money is made available to our hard pressed hospitals to carry out LLAs I can't see them being made available as an option for many of us any time soon even if they are proved to have an advantage over ACs.

I understand some elements of the N.I.C.E. guidelines for the treatment of AF are under review at the moment , I don't know if this will affect the recommendations for the use of LLAs but somehow I doubt it.

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Thanks Doodle68, for the info. It is really valuable and knowing approval in the US is barely 2 years old does make me a little nervous, I think I will give it a try mainly because my coumadin symptoms are so bothersome and life-quality interfering for me (feet and legswelling and pain/ constant muscle and joint aches and pains/ etc. Many of my sx could be attributed to other diagnoses but my docs have looked into this and ruled them out. I think one of the worst is the daily aches and pains. Also, there is more and more info coming out about possible dementia with long term use. This scares me as my brother had dementia before he died and one of the things that I hope never comes my way is loss of mental abilities. I humously say I want my mind and my body to leave this earth together. Also, for me, I don't ever want to be ar the mercy of many caregivers in US nursing homes. My experiences and knowledge about them over my years as a nurse have destroyed my faith in their care. Mainly because of what I see as financial greed over compassionate care. I understand about the financial aspect of elective surgeries like this in the UK. My sister was married for a time to a Scotsman and liv in Cumbria. When I would visit her I always wanted to live there when I retired. But she is now divorced and back in Orlando, Florida. I love the UK and would love to live there but medicare won't cover me there. Regarding the issue of medical insurance coverage we have always been lucky to have such good coverage in the states but now with our new president (no more comments) I see this along with other things changing. One ray of sunshine I see in this cloud-at least for me- is that starting this year my insurance payment monthly amount has gone up so much, I may be able to buy medical insurance in another country and break even. I've worked and lived in other countries during my career and often think about where I could live if I emigrated from the US. I really got off on a tangent here but there are many americans who are looking into this option now. If I could live in the UK I'd be packed tomorrow. Thanks, everyone, for listening. irina1975

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Hi doodle68 I just read the websites you sent and subscribed to NICE's newsletter. You have really given me food for thought. Not to be critical of out entire healthcare system, a little area of my mind was wondering about how easy the scheduling procedure has gone for my upcoming LAAO surgery. And the answer kept popping up..Moneymaker. It's Sunday so I can't reach any doctors til tomorrowmorn but I am seriously considering postponing the surgery til I can do some more research.. You've done me a real favor. Thank you. I will keep you posted. It's always been my belief that finding out how other countries handle medical situations is important. As I've said before in other posts the US Healthcare system is so profit-driven. thanks again. Lots of things to check out and doctors for me to talk to this week. BTW the N.I.C.E. website is very informative. Checked out some other articles while I was there. But for now must focus on the LAAO situation for myself. I'm leaning toward postponement/cancellation. No point in worrying about the barn door if the horse is already out. irina1975

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