Me again, apologies but I am new to the world of living with AF and medications.
Can I ask, if everyone on this forum diagnosed with Atrial Fibrillation take anticoagulants? Is there anyone aged over 64 who do not?
I take 300mg a day (dabigatran) and suffer badly from pressure headaches, similar to sinusitis pain.
I also take 1.25 mg of Bisoprolol.
I am speaking to my doctor tomorrow about it. There must be something better than feeling this miserable on drugs…
I have been n warfarin for about nineteen years with no problems apart from brittle nails.
Thanks BobD. Apparently, they no longer prescribe warfarin. Too complex to manage.🤷♀️
Your profile doesn't say what part of the planet your reside ( and I'm not asking !) but in UK - Warfarin is still prescribed and it is not complex to manage, as I've said, I manage it all myself without a problem. Could be that if you are in UK your surgery is having a run of the can't be bothereds and they are just telling you they no longer prescribe it because they have succumbed to the marketing wiles of "Big Pharma" !! Too complex to manage would seem to be the bog standard ploy !!
It's far more expensive when the INR measuring is accounted for, I gather. Also, there's the inconvenience.
Steve
No inconvenience Steve. Just the same as a diabetic taking a finger prick test when checking their blood sugar. Identical process .....all it is - is ""Big Pharma" trying to change the anticoagulant market in their own interests.
Yes - I'd agree in many cases. You're right. But not for some. My elderly friend, now 90 with permanent AF has to drive or take a taxi to his doctor's surgery fortnightly or more frequently (since covid messed up his INR). It's easy when you have a home testbed he won't get one as they're so pricey, but for the elderly especially, it's a real issue for them.
Imagine the extra cost and more that that involves the NHS and him, and many elderly in a similar boat, all taking warfarin as they are, rightly, reluctant to change meds.
"Big Pharma" often do us all big favours, I reckon! 
Steve
They do still prescribe Warfarin. I cannot tolerate the new anticoagulants and Warfarin is my only option. It is complex to manage that is why they are trying to get everyone to take the newer ones, but it is still used and if l had a choice l would still take Warfarin because it has been around for a long time and the medical profession are very experienced in dealing with any problems. Good luck.
Can i ask what side effects you had with the new DOACs? I'm finding them very difficult to take (3 taken so far, making life so miserable)
I was just so very sick and unable to have a quality of life. I remember just sitting on the sofa unable to move. I tried them all apart from Edoxaban and each time l had to be on a specific one for a few weeks to see if l could tolerate them, so l was sick for a long time. When l stopped Apixaban l had the tremors and shakes. I hope you find one that suits you. Don’t be fobbed off as only you know how you feel. Take care.
Thank you. I know what you mean about the shakes, felt that a little. I'll keep being a pain in the a**e, although it shouldn't be like this, it's wearing me down.
You shouldn’t feel like this. Some people can’t tolerate them. As a last resort l asked them myself if l could try Warfarin. I thought l was never going to feel well again. It’s the only one l can tolerate but still get tired at times. My pharmacist here said a drug should make you feel better not worse. Keep banging your fists on the table until you feel better. We are not robots and what suits one can be poison to another. Take care.
Thank you for your comments. Seeing GP yet again, tomorrow, hasn't helped much so far. So much pain/discomfort on edoxaban thos weekend, seems to get worse as time goes on.Dabigitran and Warfarin left to try. I have asked if I could be allergic , can't go on like this I know. Thank you again
For some reason l have only just got your post. I sympathise with you and know what you are going through. In the end l had to ask to try Warfarin l was so sick. They like you to be on the new anticoagulants now, but they don’t suit everyone. Hope you soon find something that suits you. Like myself you are down to the last two. Let me know how you get on. All the best.
Update - on clopidogrel , thought that I might have been okay, but no! Even 2.5 mg apixaban made me unwell. Going to ask for a Pharmagenomic test. Will speak to GP Friday, he said a lot can't cope with new DOACs. Thanks
All the best xxx
Ps ...how are things on Warfarin?
I was diagnosed with PAF 10 years ago and chose not to take an anti coagulant. I was very well during this time as I changed many things in my lifestyle. I was low risk. I had a review after 8 years and still chose not to take an anti coagulant even though I was by then 71. I had a heart attack 3 months later because of a blood clot formed when I was out of rhythm for 12 hours the day before. I am very thankful it wasn’t a stroke. So for me, I should have taken notice of the increased risk factor of my age. I have had no problems at all with my medication so it’s been an easy decision for me to continue on it.
Has it affected your renal function results at all?
Why would it? Renal function tends to drop with age anyway but mine is within normal limits.
As meds are processed by the kidneys, some potentially affecting them,I wondered ..What exactly are Normal levels? I'm seeing different figures
That's good to know anyway
The reason for regular kidney function tests when taking some drugs, is not because they affect the kidneys. It is because they are excreted by the kidneys and it is important to check that those organs are working correctly or the patient may become ill if the drug is not being cleansed. As I said originally kidney function drops with age so since we AFers are mostly olduns we have annual liver and kidney function tests.
I am 71, with AF at night for about 15 years, and do not take any pills at all. I may suffer the stroke, but the others, who buy the story of "5 times larger stroke risk", will for sure put tons of medication through their body. Not advising anything to anybody, just to be clear... The decision is up to you.
Thanks for your response. Apparently, I have to take Bisoprolol for Hypertension as well as lowering my heart rate.
I absolutely loathe taking medication of any kind. It feels worse than the symptoms of AF.
Do you suffer from high blood pressure?
I have slightly increased BP, from the age of 45 - I sometimes measure 190/120 but recently mostly 160-170/70-80. I got BP medication prescribed (had to visit GP when I wanted my drivers license renewed), but have not taken a single pill of it.
In the times where the profit was not so important, it was considered that the systolic BP value is OK at 100+age (170 in my case), so nothing to worry about. I feel perfectly well at 170/80 (sometimes 90), I function well, so no reason why to take the pills. I come from Balkan and us, from Balkan, are not the people to get scared so easily.
The more medication we have, the poorer health we have. Just look at the kids! In Serbia, in 1980, we had 1 autistic child in 1000 children. We almost had no overweight children. But now we have come to the point to have 1 autistic child in 57 children (my wife says that she picked up the information 1 autistic child in 7 children). We also have about 30-40% of overweight children, then children with diabetes 2, etc. Conspiracy theorists say that it has something to do with early vaccination of the kids and the holly process of depopulation (we have over 400.000 young couples which can not have children).
The 'story' of 5 times greater risk is true. I was 74 when I suffered my stroke having had AF since 1995 but never given anything more than aspirin. I don't want to advise you either, it's your decision, but I was so complacent at 73 that I was so fit that I started reducing my beta blocker. I wish someone had told me I should take Eliquis at that time.
Thank you! I am certain that you wish me the best. But...
As the first, the medicine doctors admit that they do not understand the mechanism of clot formation at all.
As the second, the calculation of "5 times larger stroke risk" was performed with the data for the number of diagnosed people with AF as being somewhere 1,8% of the population in UK (maybe it is slightly different, but about 2%). Screening on AF in Denmark (I think 10.000 people, with ECG holter monitor for 2 weeks, look prof Angelo Aurrichio, Switzerland) has shown that the percentage of people with AF is somewhere at 40% of the population, with large possibility that it is still larger (many people with paroxysmal AF were not caught in these 2 weeks). So, with what data was the calculation performed?! The number of people with AF may be as high as 70% in general population. This estimation is based on the percentage of overweight and obese people in UK, which is 67%, the same percentage as in USA. All such people are prone to AF and most probably have it from time to time. Sorry for being so long...
"Scare them to death, and then sell them whatever you want!"
Of course my comment was made as I do wish you all the best and don't want to see anybody suffer the same consequences as I did. I have to admit that my thinking has always been similar to yours and had my doctor offered me Apixaban before it is quite possible I would have said, 'Oh! I am not likely to be at risk! I don't want to risk all the consequences that anticoagulants present!' I was always very reluctant to take any new medication.
Whatever the increased risk from AF actually is, we DO know that it is very considerably increased and blood clots can and do form particularly in the LAA (left atrial appendange) during episodes of arryhthmia.
In the end of course it is your own decision and all we can do is advise from our own point of view. If you make your decisions based on what people here say, I am sure you will make the right choice. And we all wish you well.
My husband didn’t take anything after his ablation . It obviously had stopped working as he had a severe stroke 7 weeks ago due to a clot in his heart caused by AF. If he had been out in thinners might have been a different story to today ,
O that's awful. I', so sorry for both of you.I hope he is feeling more like himself now. Best wishes x
Thank you Jackie, I hope your husband is ok. 🥰
Running the thinner gauntlet reluctantly at the moment, options depleting. What is your Chad's score, mine is 2 (69) due to age and sex. Thinking along your lines 🤔..
Sorry, but I do not know what my Chad's score is... I am male, 71 yo... Rarely go to visit GP because of very good health for my age. I am not certain of good intentions of Big Ph, so do not accept the medication... There is NO magic pill for everything and pills sometimes do more harm than help. Just look at excess deaths after the jabbing business.
reading, crumble2 and forces my feelings on taking anticoagulants. I am glad my doctor immediately put me on one even before they had a definite diagnosis of a fib. My first warning was blacking out twice within the same time period one night foolishly I went to bed even though I should’ve known better.
You do not stay the same age and with age comes body changes. I am glad you don’t recommend not taking anticoagulants. There are some that cannot take them and now they are working with the watchmen, hoping to be able to help those people avoid clot. I would much rather pop a pill, then have another device inside of me. Good luck with your decision.
My answer is not helpful, because there is really nothing definitive to say. I take Eliquis because I have (had?) Afib episodes and am advised to and because there is a family history with strokes. It is a choice I made. I am not aware of any harm, so far, from Eliquis after 3 years. It probably at least has a placebo effect in helping me think that I am safer with it.
When it comes to preventative therapies, we are each a statistic: some of us would be fine without anticoagulants, some might have a stroke with the med but more may have strokes from not taking them. Some may experience side effects, others not. Doctors look at statistics to predict what may be beneficial to us and what the risk of side effects is.
It is a little like an insurance policy: You may or may not ever need it. Someone's tests showed that anti-coagulants lowered the incidence of stroke in Afib patients, I assume. Which statistic are you? No one knows. It is your call. Sometimes I follow doctors' and the medical establishments advice regarding preventative medicines, and sometimes I don't.
I told you I would not be helpful!
Hi,
I was diagnosed with AF in January 2010, aged 65. Put straight on Warfarin ...... all these new anticoagulants that have come on the market since weren't even a twinkle back in the day ! I was also put on Bisoprolol (5mg) ( for HR control) which I stayed on until early August 2023 when I switched to Nebivolol (2.5mg) ( for HR control).
No problems with Warfarin at all and it is freely availble via my Surgery repeat prescription service. I also self test, have my own device and work closely and harmoniously with my GP and my INR clinic. Sorted. No sweat ! I have also had 3 medical/surgical procedures whilst being on Warfarin with no ill effects - which includes knee replacement surgery. What's the problem ?
Many folk haven't been able to cope with Warfarin and these batch ( of 4, I think) new anticoagulants have been a blessing - however - as time has moved on with the use of these drugs many people cannot handle them either. My GP has tried to persuade me to come off Warfarin ... I've refused - point blank - and so we just carry on with Warfarin. Maybe you should ask your surgery for a review of anticoagulant medication and try something else - one of the alternatives.
Don't complain about feeling miserable on drugs ....... you and your family should consider how you'd feel working through the impact of an AF origin stroke. If you survived it.
Yes as I mentioned above , my husband is suffereing the consequences of not taking thinners after his ablation. In 2017,. He s had to give up his job because of a stroke 7 weeks ago , effecting his speech , vision , ability to read and write . He can’t drive either now , The vision side of things hasn’t improved much as yet .
Regards
Jackie
P/A/F was responsible for me having a stroke in 2000 and since then I have been on anticoags and will remain so until I die!
Hi , sorry to hear about your stroke , our situation is quite fresh, 7 weeks ago , was wondering if you could tell us a bit about your experience and any advice. Thank you
Regards Jackie
I was 56 at the time, had diagnosed P/A/F for a little while but cardiologist didn't want to put me on blood thinners because I was considered young lol, so I was taking 300mg of Aspirin daily. I was in and out of P/A/F, normally at night and on Flecanide. I felt particularly unwell one night continuing in A/F throughout and the next day I was exhausted and did not go to work, during the course of the day my eyesight became a problem with pixilation. I rang my GP and my husband came home from work and took me to see her, she then rang the hospital with my details and in I went. I was told that I ha d a blood clot and remained in hospital for 2 weeks, caused by my A/F. When I came out of hospital I was depressed (apparently normal due to something in the brain!) and had lost a little of my vocabulary plus felt that I was dragging my left leg a little. This was in effect the end of my career having worked in leisure for almost 30 years I was invalided out of the service. Over the period of a year I was more or less back to my normal self, regained full use of all, moved house and got on with my life albeit as a retiree. My P/A/F has stayed with me and at the moment becoming quite a nuisance but hey, I'm still here some 20 plus years later!!! Good luck.
Thank you . Nice to know that life can carry on even though it’s really hard going through it .
Opal I am so sorry that happened. My uncle had a stroke during drainage of his knee because of a medication they overdose him on. I mention it because a stroke is a stroke and being familiar with how it affects a person I will do anything possible to avoid it. When my doctor told me with the pacemaker, I will remain on an anticoagulant for life as things stand right now minus. Of course we never know what else may come out eventually but I am 71 and taking a little red pill. Each evening is not a big deal. He looked at me and seem surprised that I had nothing negative to say. People that are anti-anticoagulant. I wonder if they have anyone close to them who has had a stroke? I know that the suffering of them being trapped inside their body, unable to speak or move is enough for me to have no issue taking a pill.
Healing, thoughts and prayers for you always
Thank you Dawn, I have been guilty this past year of self changing my medication and it has back fired. I lost 5 stone and thought well thats less pressure on my heart I think I could wean myself off of one of my drugs Disopyramide, this was successful however unbeknown to me it sent me into permanent A/F which wasn't detected for some time and I now suffer the consequences so, during the past 3 months, my dosage of Bisoporal have been increased from 2.5 mg to 10 mg and I am back on the Disopyramide, although that drug is now getting very difficult to obtain so cardiologist is recommending an alternative, Propafenone. I thought having an ablation in 2015, which failed, and being fitted with a Pacemaker would leave me drug free, oh how wrong I was, now I take all of my little pills without question because it has made me realise that sometimes I really don't know best lol. Having been drug averse all of my life I now now that without them I don't have a life. Take care of yourself
I only played with my meds once, but that was because my GP said I could take up to 100 mg of one of them. It didn’t help FYI this was before my pacemaker. Even with those we still have issues at times. They are weaning me from my EP because for the most part his work is done for now. I saw my cardiologist today just to get back in touch. I have not seen him since the EP took everything in November 1922. My cardiologist immediately upped my metoprol. For some reason I have gone off kilter this week including chest pressure in my heart rate is up to 82. I am set for 60. When simply working, etc. he said my pacemaker should not have to work so hard as I am working it. Just because we get a pacemaker it’s not a done deal which is why I will remain on my anticoagulant and anything else they tell me to take. I actually have palpitations right now and I am laying in bed. I also have heart failure although it has actually reversed a bit. Please don’t play with your meds. I know your health care system is different and difficult and we definitely question decisions at times but question and tell them you’re questioning it don’t put yourself at risk
PS my cardiologist stated again today as has my EP app with the type of care nowadays I will be on my Xarelto for life. Of course he takes into consideration other things being done and researched. I know they have the watchmen, but even if I could get it I’m not sure I want it. I think I have enough devices in my chest right now lol
Thank you for your reply Dawn, you are quite right and I have learned my lesson. I have been told that we can go on for years living with heart failure and I have accepted that at almost 80 years of age my years are limited anyway however, I have lots of wonderful years behind me that I can reflect upon, a marriage that will be 63 years old this year, two brilliant and successful sons and equally the same with 4 grandchildren who I have seen grow up and helped shape their futures, I have travelled widely and have wonderful memories, a good life well spent, so the fact that I can no longer play my beloved table tennis (since breaking my hip last year whilst playing) nor can I dance around like I used to, is I guess expected at my time of life but, as I said to the surgeon who performed my hip replacement, don't you dare call me a geriatric!!! Take care of yourself Dawn, just keep going and don't let it get you down, as my mother used to say 'tomorrow is another day' xxx
Thank you 😊 one thing that people need to pay attention to is depression and anxiety. He is a believer in the mind, body and soul connection. When everything was failing last December for the first time, I thought I could not get up again I always got up when I fell down so to speak but here I am. From my days, working law enforcement I find that if you just take each thing as it comes rather than let it pile up and overwhelm, you are much better off I roll with it is what I say because if you sit there and think about how hard things are, it will just be too much. As you say, said tomorrow is another day and one day at a time.
The past few days I’ve had a few issues going on. But today I felt better. By the way, since my pacemaker, my ejection fraction rate has gone up. My EP is thrilled. He had hoped with the pacemaker that my heart failure could reverse a bit and I did. It is 76% plus I have no blockages. Every day there is new research and new findings so we all just have to hang in there. I am not due to see my cardiologist for six months or my AP after my next visit next month. Considering I have practically lived in his office. For the last year and a half I’d say that’s a pretty good sign.
keep in touch. Let us know how you were doing.
You need to weigh up the risks and consider the benefits of any medication and it is a state of mind. I came off anticoagulants after one year free from AF following an ablation and then had a TIA. For me the risks of stroke are now high and continuing to rise, having already had a TIA.
It is your choice surviving a stroke is not something I want to experience so I changed my mindset about taking meds, anticoagulants are now my best friend.
I should think most of us are, as without them the incidence of stroke is likely to increase considerably. Having had a stroke 3 years ago caused by my AF, you really don't want to go there no matter how miserable you feel! 
More seriously, there are quite a few anticoagulants to choose from and many here are taking Apixaban, which is relatively side effect free. I must admit that ever since the stroke I have had suffered from what you describe as pressure headaches and blocked sinuses, which I have never associated with my anticoagulant... Perhaps it is. But even so, it is better than the alternative. Talk to your doctor about what alternatives there are and what dose is appropriate to you.
Hi, spoke to my GP yesterday. He believes the sinusitis pain is not related to blood thinners. He has prescribed a steroid nasal spray, and steam inhalations using menthol.
I tried the inhalation yesterday and it seems to have eased the pressure.
Sorry to hear you had a stroke. I am going to stick with the meds. The risk of stroke is very real.
GP has split my Bisoprolol to morn and eve to lessen the side effects.
I hope that the simple solution actually works for you. I have tried all of these and even had a sinus MRI scan which showed no actual blockages. But I still suffer every morning, something I have done ever since the stroke, though there are no other obvious physical effects. Probably just one of those things as we get older!
Again there are different ones you can try. Also if one does not hit you right. I am so glad you will stick with the meds. I had mentioned earlier yesterday that we tend to blame everything on a fib and treatment. Once we know we have it, but there are many other pieces in our body. They can go haywire. After my pacemaker, I continue to have some chest pain etc. in the beginning it was the AV node ablation which I forgot ablation give me that ache. After two months of still complaining, my doctor had every test he could done because I do tend to get pericarditis. Nothing clean as a whistle. He determined it is my anxiety which I was not happy to hear because it’s easier to take a pill, than fix that. He suggested that the med side take as needed be taken full-time right now. He was right
Afib is so awful it’s easy to blame everything on it
There are other anticoagulants to choose from. I also started on dabigatron, and had severe headaches. I switched to apixaban and am tolerating it very well.
This is a question answered IMHO by doing some homework here and then having a frank discussion with your cardiologist (it is worth paying privately just for this ) taking fully into account your own wishes not just blindly accepting the medic's.
I am 70, diagnosed Lone PAF 10 years ago and not on anticoagulants.
I’ve been on Warfarin for almost fourteen years due to an Aortic Valve replacement and never have a problem with it. I also suffer from AF fir which I have just recently had a pacemaker fitted. Warfarin does need monitoring regularly, and in my case that is very couple of weeks it so, but it isn’t a problem and it has always covered me from having a Stroke when I am in AF.
My husband had a triple AAA a few years ago an originally on Apixaban but this was changed to Warfarin after it was discovered he had blockage in a vein in his arm.
I’m 67. I was put on Edoxaban (anticoagulant) when diagnosed in May 2021, along with Bisoprolol. Stopped Bisoprolol in April this year after ablation last November. Don’t think the Edoxaban has caused me any issues, but I was really glad to stop Bisoprolol.
Bisoprolol was worse than the effects of AF for me - as were all the other beta blockers and rate control medication - I tried most of them out there over about a year and also combinations of them.
Bisoprolol was the worst for me as well, much better without.
I am taking Biso to control my high BP as well as AF episodes.
Do you suffer from high BP? If so what meds are you prescribed?
I take no heart meds at all, lots of others so that my muscles work but I cannot take those with any heart meds & I haven't got high BP, I'm the other way - BP has been too low in the past but now stabilised with Pacemaker implant.
Husband is on bisoprolol and digoxin for heart rate as well as Edoxoban for blood thinners .
There are frequent discussions on this platform re the efficacy of prophylactic use of anticoagulants with AF to reduce the risk of stroke. The statistics can be helpful in predicting outcomes for whole populations but the numbers can be less helpful when it comes down to an individual. There are too many variables for precision. The original research which purports to indicate a 5 fold increase in risk was carried out in 1978. This figure is frequently quoted. There has been lots of research since then some of all of which supportsthe proposition that there is a substantial risk of stroke associated with AF. It is fair to say that some meta analyses suggest that the degree of risk may be less than 5 fold.
There are pertinent risk calculators which are often used to help determine individual risk. CHADVASC, HASBLED and QRISK. The risk scores are lower if you are younger and have no comorbidities.
The data from using these calculators indicates that I have a 1.5% risk of a stroke within a year,16% within 10 years. When I reach 75 this risk will increase to 25% over the subsequent 10 years, which is about my life expectancy.
I personally do take edoxban.I tolerate it well. I believe that my risk of a bleed is a little higher than my risk of a stroke but the consequences of a stroke are likely to be much more serious.
I think that when you see research results from pharmaceutical companies which indicate risk increase illness and risk reduction from taking medicationit it is worthwhile making a distinction between absolute and relative risk. To my mind they are opposite sides of the same coin but I do think that results expressed as a relative risk have the capacity to exaggerate both risk from the condition and the efficacy of the medication.
Regards and good luck with your treatment.
Thank you for you response and interesting analysis.
I have experienced nocturnal PAF symptoms since 2017. The diagnosis was always given as “Anxiety Disorder” as my ECG was regular, chest x-Ray normal, bloods fine.
This surprised me as my family history is one of strokes/bypass surgery etc. This is the reason I don’t smoke, eat processed food, drink very little alcohol and I am not overweight.
I was prescribed cognitive therapy to reduce my anxiety.
I had to monitor my BP at home which was always showing below 140/90.
That said, a few weeks ago after a very busy week of stress my nocturnal episode lasted into the following day/evening.
Advised to visit A&E within the hour where diagnosis of PAF was confirmed. Since then BP has consistently been higher than the acceptable measurement.
One of my concerns is the damage that may have been caused by previous mis-diagnosis and not being prescribed meds. Although, to date my blood results have all shown to be normal-including troponin.
I appreciate the risk of stroke possibly outweighs the side effects/risks of medication. However, the side effects are awful (GP advised to give them a few weeks) and I can’t help wondering if I will ever feel normal again.
I appreciate there are others who are worse off than me. But going from an active person to a lethargic one is disconcerting.
Thank you for lending your ear to my ramblings.
I would say the majority of us have had a change in lifestyle after a fib struck. I was walking about 5 miles a day back-and-forth to the clubhouse to swim until the night I woke up facedown on the floor, not once but twice. No one likes the change, but we have to put on our big person panties and do what is right for us to keep from getting worse. That isn’t always easy nor does it always work because afib is in charge and there is no cure only Band-Aids right now. Within 2 1/2 years I was fitted with a pacemaker. Once someone knows they have permanent I almost wish they would just cut to the chase and give us a pacemaker so we could have quality of life again. My view of pacemakers changed drastically even from when it was first mentioned. For the most part, I feel so normal now my doctor said I should be able to do anything others with a heart are able to do. The fatigue I feel is from my heart failure. It is what it is also medication. Some have been changed to taking at night. For the most part, we are all in the same club. FYI. Be good to yourself don’t be foolish only you can make decisions with your doctor. The majority of us have learned from experience or are smart enough to listen to others when it makes sense for us. We all have a brain you can’t let a fib. Take that away also. You may never have another bout of a fib there are people like that. I know things I do not want. I do not want a fib to kill me. They say it won’t, but I think that means if you are smart about things. I do not ever want to deal with a stroke. If I can avoid it, and I do not want any doctor or other medical person treating me as though I were an idiot, especially because of age. Some doctors act as if we are disposable when we had a certain age. All I can say that anyone is, that is unacceptable.
You are not alone none of us are martyrs with us. I think I just heard a number of 300,000 people in the US have a fib right now and they expect that to double. If they can’t curate, I wish they would figure out what causes it whether it is something we are being exposed to or? I know in the US lifestyle can be unhealthy especially since Covid
I wish you well I’m so happy that you have decided to take the meds if the change in them doesn’t help though ask for something different. It is not one size fits all. I have been on Xarelto from day one. In the beginning it did not take much for me to bruise, but then again, I was extremely clumsy, evidently from the afib as well. Not in the beginning, but when it returned just before I moved to Texas, it seems like I spent much too much time on the ground and oh how I was bruising. For whatever reason that rarely happens now other than blood draw and things like that with small bruises. I have had nothing else that I can complaining of being on it recently one of my cats bit my finger. I probably needed stitches but I did not go. Even with that so it continued bleeding. It was not bad. I feel good, being on it. And it still possible I’m sure to get a clot but I want to help not get one.
Playing Russian Roulette is not for me.
If you are suffering on one blood thinner ask to change to a different one. On Edoxoban I suffered terrible shortness of breath, switch to Apixaban and all side effects gone.
Even a small stroke can be life changing. A series of mini strokes over time is what we call multi infarct dementia. People with multi infarct dementia can become profoundly depressed because they remain aware of the step by step memory loss, which is not how I want to end my days. I’m prepared to adapt to the side effects and barely notice them now, enjoying a full and happy life. AF is associated with stroke, heart failure and dementia and I trust my EP cardiologist to know more about the risks and the best preventative medicines than I or anyone else on this forum do.
We are all individual and respond differently to different meds. In my experience it has taken time to work out the best balance, but it has been worth building a good relationship with the EP (I’ve paid for a couple of private consultations which gives you time for a good long discussion) and with the NHS cardio team. My GP is lovely and has learnt quite a lot of new stuff from me too I think!
Good luck on your AF journey. I was newbie just a few months ago - it’s a sharp learning curve!
I was for 12 days put on Rivaroxaban. It didn't agree with me. I opted to take Warfarin and have my own INR meter. Every couple of months I email my arrhythmia nurse with my INR reading. I've been in Warfarin for many years. It's not difficult to manage. I have a pescatarian diet. I eat green vegetables daily.I look upon my anticoagulant as my best friend. There's a range of anticoagulants to choose from.
I’m 65 and have PAF. Last 9 months in sinus and just on low dose metoprolol. I am aware when I go into AF and go immediately to my Apixiban. I have Apple Watch which I check daily as I exercise to monitor any jumps in HR. Even if I convert back the next day to sinus I stay on it it for a month. My cardiologist checks with a TOE procedure to see if I have a blockage of the atrial appendage which is were the clot usually forms this happens before a cardioversion or at my annual review. They will refer to CHAD score and mine will go to 2 when I hit 75 and then I will go full time onto Apixaban as my risk jumps a lot due to age. He suggested I take the daily aspirin which I understand does not protect as do the anticoagulants. If you cannot sense when you are in AF or have low rate AF so don’t notice the AF then it is risky and you might want to discuss Anticoags with your cardiologist
Yes My husband didn’t even know his rate was at 160 beats a minute before he had his stroke .
I am on 50 mg of metropolol succrate XR it makes quite the difference, avoiding palpitations, etc. no, they do not affect my heart with my pacemaker, but I can still feel them and prefer not to. My doctor also did TOE before both cardioversion. It is automatic with him to ensure no clotting. I always know when I am getting my atypical flutter. My a fib is gone but even now for those unaware, you will feel things, but if you got the AV node ablation, you’re a pacemaker is in charge your heart will no longer be affected by a fib or flutter I have been very lucky that finally, I have meds that agree with me. Prior to my pacemaker everything failed within weeks. We don’t know what we don’t know and I don’t know what tomorrow will bring but right now I am loving life as much as possible.
I don't take anticoagulants at age 76, but my decision is due to my personal medical situation of having previously suffered unexplained chronic bilateral subdural haematomas. So with the fear of a repeat brain bleed, and the fact of living alone, and the fear of being incapacitated if I was anticoagulated before I could call for help, and with no comorbidities, has led me to refuse anticoagulation at the moment. But my decision is always under review.
A Forum member just referenced the "5 times greater risk" re AF and strokes assertion again, and this figure has always been of concern to me. So I thought it might be helpful to repost a contribution from another member in the past about this ...
“This study is the source of the "x5 risk for stroke in AFibbers" figure regularly quoted by all and sundry and can be found here:
Wolf PA, Dawber TR, Thomas HE, Jr, Kannel WB. Epidemiologic assessment of chronic atrial fibrillation and risk of stroke: the Framingham study. Neurology. 1978;28:973–7. [PubMed] [Google Scholar]
On first glance I could see that the study compared people with AFib and RHD (rheumatic heart disease) with people with AFib and no RHD, the conclusion being that there is a x17 risk of stroke in the former and a x5 risk in the latter.HOWEVER (drum roll....) this evening I took some time to read through the Wolf study more fully than my original quick scan....and imagine my surprise when I discovered the following:
"We excluded subjects with stroke prior to the onset of AF. Persons found to be in AF for the first time when hospitalized for stroke were excluded, as were those with known paroxysmal fibrillation. In order to provide a clear and prospective picture of the development of stroke in AF, we included only subjects who were fibrillating on biennial examination."
This means that people with paroxysmal AFib weren't even included in this particular study and that all subjects had persistent AFib!I'm staggered that this figure (of x5 risk) is applied so indiscriminately……..”
That 1978 article is easily available online with a Google search.
Hope something helps.
Bob.
Have you checked out a Watchman implant?
watchman.com/en-us/alternat...
Was that question for me? If yes, you chose the wrong Reply option.
In UK, patients are not so familiar with the Watchman device and it's development, successes and risks. I think it is available for those who cannot tolerate anticoagulants, but Apixaban was recommended to me, so I don't have that choice at the moment. Apparently a medical team made that Apixaban decision based on my medical history, but I only communicated with an Arrhyymia Nurse and a young newly trained pharmacist about my AF and anticoagulation. I feel I need a fuller consultation re stroke and bleed risks with an experienced Haematologist or Cardiologist. But that hasn't occurred yet, and seems unlikely unless I pay for a private consultation.
Thanks for your suggestion though.
Bob I understand there are 2 dosage levels of Apixiban so maybe the lower dose might offer a lesser risk of bleed for you yet still offer some protection from clots. I did see a study comparing the 2 doses in an older population which suggested as expected it was marginally inferior to the higher dose in terms of clot prevention yet still offered similar protection as Wafarin. I’ve been searching but cannot find the study
Now that's interesting, thanks for the info. If you find that article please send it to me. In the meantime I'll try to find It as well.
PS. Who do you think would know best about my brain bleed risks (with and without anticoagulation) if I sought out a private consultation... a neurosurgeon? a neurologist? a haematologist? a cardiologist? or an EP? 🤔
The decision in my case seems to have been made by a multidisciplinary medical team, but I can't afford 5 private appointments. An unfair question to be sure! Perhaps I need to ask Forum members in a new Post. 🤔
bob.
I found quite a few articles on lower (half) dose Apixaban. However I don't fit any of the 3 current criteria (age, weight, creatinine clearance) used to select suitable patients, but I will mention it if I ever get a chance to question a "brain bleed" medical expert (what/who/where!), if such a medical professional exists.
I’ll keep looking Bob for the study. It’s discussion concluded for those with higher risk of bleeds the lower dose of Apixiban whilst marginally inferior to higher dose for protection against clots suggested it still had similar protection to wafarin. From memory participants were over 80 years of age
Even here in the US that is not a first choice because it is not a fit for everyone including the size of the device, although they were working on making another size. As long as my Xarelto works for me, I think I’ll avoid having any more devices put inside lol I already called myself, the Bionic old lady🤡
Something I will be asking my cardiologist next week.
Thanks.
Hi
You can take a lower dose of the PRADAXA, I take 110mg x twice day.
On the Forum folks haveexplained that the capsule is difficult to digest and
some say it gets stuck in throat.
I take mine with water and then fruit juice.
I have no trouble but I have no gall bladder so bile drips into my stomach all the time. The gall bladder's job is to let bile in with the amount of fat etc to enable food to break dowm.
Ask to be put on reduced amount and see whether if that helps.
cheri JOY. 74. (NZ)
I've been on anticoagulants since I had a stroke 18 months after being diagnosed with AF and told I should take anticoagulants. I've been on Apixaban for 3 years now. Age almost 80. Don't want to risk another stroke. No other medication. Feel great.
All the best.
Roy
I'm 49 now, in permanent AF, been diagnosed officially since July 2022 but cardiologist says it's likely I've had this for at least 10 years prior.I take 10mg Bisoprolol, 125mg Digoxin, and 20mg of Rivaroxaban. Will see how long I'm on these before any tweaks are done. I definitely wasn't keen on going on Digoxin as it can clash with my Epilepsy meds.
I've taken Eliquis since my ablation in 2016. The doctors recommended it and I intend to follow their advice. I took Warfarin for a time before Eliquis, and found it to be a (negative) life changer in all that was required from me as to diet and unending appointments to check the blood level. Eliquis is SO MUCH easier to take, but it is expensive.
AF is a very individual condition, the "uninvited guest" affects everyone in many different ways. Upon diagnosis the CHADVASC score is recorded by an EP (see scorecard attached) the results will determine the risk factor on an individual basis taking into account age, underlying health conditions, etc as to whether anticoagulation therapy is required at the time.
For guidance regarding your medication, write down all your questions to ask the doctor today, and if possible take a chaperone along with you - often 2 pairs of ears are better than 1 pair in these situations!
Our Patient Services Team are also available if you need any support or advice too, contact us on:
info@afa.org.uk \ +44(0)1789 867 502.
Perhaps you would like to join our AF Online Coffee Morning on Thursday 14 September? For details on how to register, visit: heartrhythmalliance.org/afa...
During the call, you have the opportunity to ask your questions and meet others on the call.
With a new diagnosis, I recommend joining us at our AF Association Patients Day on Sunday 08 October, taking place at The Hyatt Regency, Bridge Street in Birmingham, UK. Once again the perfect opportunity to learn from, and meet the medical experts in the field of AF and ask your questions, for details visit: heartrhythmalliance.org/afa...
Our early-bird discount will expire on Thursday 31 August 2023 - so do it today!
I hope to see you at one - or both of the above events!
TracyAdmin
I love what you wrote that seems hard to get it into peoples heads that, although we all share certain parts of it, it truly is different for everyone. Even our tolerance of things. I had no idea how unique my own situation was even after my doctor told me. He told me how special my pacemaker etc. would be and that I was unique lol I would laugh and ask if that meant I got a special discount. About a month ago my pacemaker battery life dropped more than 50%. I have an app on my phone so I could see it. Long story short for me because I am long-winded. My usage is 100% all of the time the first 90 to 120 days are evaluate it before you see true numbers. They said they had considered me not being able to see the numbers but it’s just part of the software. Imagine realizing all of a sudden your battery had dropped so much so instead of 11 years it said I had five. My thought was what if it drops five more will I be dead? It took a meeting of engineer/doctor/Tech to figure this all out because the engineer can go in the back door of everything I guess he told the truth that I am unique lol
Hopefully in the near future you will hear more about HIS pace bundling. My device itself is not unique that I know of but the wiring is specifically for me because of my own issues with the heart plus I have heart failure now as well. I just had my fourth month follow up. My doctor is over the moon about everything. We don’t know what tomorrow brings, but I am going to enjoy right now. My doctor is not in the big medical community of Houston, but at a hospital outside in a small humble town. It just shows there are things on the horizon we don’t know about yet. He did not want to give up on me. He thinks outside the box and I am still alive because of it. Thank you for your sight here. I know I talk a lot on here. I am not a know it all. I only share what I know about me and I want to see people not afraid of afib. We have to respect it because it’s in charge. We don’t have to like it. Thank you again for being here and Bob is awesome.
There are several options of anticoagulants, so yes, make sure you talk to your doctor. They will have to fight me to take mine away, knowing what they do for me. Let’s hope they can find a better fit for you with a different one. I know my EP considers it very important, and I will be on it for life. That is OK. I would prefer that over chance of having a stroke any day. They do have the watchmen device now, but it is not one size fits all supposedly there are many who have this and do not need anticoagulants any longer. I have enough implanted thank you. I think I’ll just keep taking my little red pill. I’m glad you’re seeing your doctor so that you can feel better soon.
Thank you DawnTX.
Having since spoken to my GP, he is of the opinion the side effects are down to Bisoprolol (treating high BP) as well as reducing AF episodes.
We discussed splitting my dose (morn and night) for a few weeks. If that doesn’t work he will look at other options.
I have an appointment with my cardiologist next week - so I intend to discuss options with him.
That is wonderful that you will be speaking with your cardiologist. I am so glad you spoke up. I am still on a BP medicine losartan even though my bp tends to run low for about the past year and a half. If it goes up and tends to be anxiety. I am on Metropolol succrate since my pacemaker. It helps to keep those thumps etc from my atypical, flutter to a minimum.😊 please keep us informed how you are doing. There are so many new things around the corner. I think this might be a good time to have a fit if there ever is a good time.NO 😡 lol thinking of you
I'm 67 and suffer from PAF which started about 2 years ago. I'm currently having an episode roughly every two to four weeks, and I take 200 mgs of Flecainide and 20 mgs of Propranolol immediately an episode begins which generally stops it in an hour to two hours. Due to my age and gender my CHADS2 score is 2 so I was prescribed Apixaban but I choose not to take it daily but I take one immediately an episode starts and for several days after.
I'm not entirely happy with the risk but I'm entirely not happy about taking a bunch of medications every day for the rest of my life for something that maybe happens an hour a fortnight or less. I'll hold off as long as I can. I had a nasty case of Covid a month ago though and was running a fever and feeling absolutely ghastly for about a week - and was going in and out of AF for the duration. I took the Apixaban the whole time and for a few days after.
There's no easy choices with this condition, it seems like.
I am very surprised in the UK, it appears that people do things with their meds on their own. I consider the fact that my doctors not me went through a lot of education to learn how to take care of me and I am going to follow their instructions. If I run into a problem like I did this week, then I question it. As far as whether or not, you choose to have an ablation I mean you could always say no. My doctor in Florida decided when I needed one and one thing that they go by is whether or not there is a good chance they can get the area because you can be off by a millimeter and then it will not work. Some people are lucky. Some are not with a successful ablation.
Best of luck. I have a state of the art, pacemaker wiring and more now done in February and I still run into issues. This week was a tough week. It may have been caused by my cardiologist. Changing my meds a bit. I see my EP Wednesday and I am taking my regular dosage until then. That’s about the mostI play with my meds. I discovered that I am feeling better already so I think cutting my BP med caused me a problem and an increase in my metropolol. That was probably not a big deal. Ck the joys of a fib no cure most things are Band-Aids I don’t have any regrets about my pacemaker. Now that I finally felt as if I turned a corner feeling better. It is never ending with a sofib but it’s not that hard unless you make it that way.
Hi - I'm not entirely sure whether you meant to reply to me or to the OP as you mention ablation which I hadn't said anything about.
Anyway, as far as 'doing things with our meds on our own' I would say that that's not that common in the UK - many/most people do what their doctors recommend. In my case I have a very long history of being told things by doctors that turned out to be incorrect, and have long made it a practice to find out as much as I can about my own medical situation and make my own decisions, with as much input as I can get from my doctor/s.
Unfortunately the NHS is struggling at the moment and in the two years I've been experiencing AF I've had one 8 minute face to face appointment with a cardiologist so any discussion about my condition is very thin on the ground! If you've got an EP that you trust that must help matters considerably.
What's a sofib??
Lol so fib is some thing that types so when you say a fib lol.
I may have hit the wrong one if you have not mentioned, it sounds pretty obvious to me that went to the wrong person
Does anyone know of published research on why being birth gender female was put on the CHA2DS2-VASc scoring system?
Hi FraserB, this article may answer your question. ahajournals.org/doi/pdf/10.....
Thank you for sharing that article! Not that I'm an expert on reading study papers or anything but it appears that the mean age of the women in this study was older than the mean age of the men, and the CHADS score was higher for the women which surely would account at least partially for the higher stroke rate amongst the women, or am I misunderstanding?
"The mean ages for women and men were 76.6 years and 70.3 years, respectively; the mean CHA2DS2 VA scores were 2.7 for women and 2.3 for men. "
Thank you Fight-the-good-fight for finding the research paper. It's informed my understanding of birth gender female inclusion especially the complex interactions as to why it's an indication of a risk modifier and not a risk factor.
Worries and anxiety over stroke and AF can’t take blood thinners 
Blood thinners?
Blood thinners
Confused about blood thinners and hosp...
