I’ve procrastinated for sometime over taking anticoagulants. I. Have PAF and I’m an active person. I’m concerned about spontaneous bleeding etc . Any thoughts please .
I fully understand NICE recommendations but real life views would be appreciated please .
We can only give personal experience rather than advice but if you have AF and CHADS score of 1 or more than yes. If your AF burden is more than occasional - IMHO - yes.
You need to weigh up the benefit:risk of having a stroke or having a bleed and this is calculated by 2 scoring systems - CHADSVASC and HASBLED to guide
I’ve been on anti-coagulants since 2013 - had no spontaneous bleeds - have never heard of anyone who has had - have had surgical procedures - dental work - cut myself and never had a problem. My husband has had some minor rectal bleeding but it wasn’t a concern and he is 87 so age has a lot to do with it.
I think many of us can relate to the fear of the idea of taking anti-coagulants, look back on my posts to 2013-14 and certainly there! Now - I can’t imagine not taking them as I had a TIA in 2017 after I had stopped taking them after successful ablation and no AF for a year, fear of stroke for me outweighs fear of bleeds.
Hope that helps
Very helpful many thanks
Hey kalgs...I personally feel reassured and confident, not to mention protected, on warfarin and my other meds.
CDreamer has covered everything- AC is very important if your scores show you are at risk.
Hello kalgs, if you would like some advice or information regarding anti-coagulants, please feel free to visit our AFA website heartrhythmalliance.org/afa... to view our Patient Resources or and join our 'Virtual Patient Educational Platform' for video presentations on a range of topics, or alternatively, please contact Patient Services info@afa.org.uk or call the helpline on 01789 867 502
Only gave my personal experience and my EPs advice to me Tracy yet comment removed?
Ian
Now I'm intrigued. I would interested to know what your EP said 🤔
Il PM you Lily, seems like it's a little incendiary atm posting anything deemed "controversial".
Nothing controversial, and certainly nothing to advise anyone on anti coags either way, anyhoo 🤷♂️
Thanks .
As mentioned I think most of us on anticoagulants had some concerns about bleeds initially, I certainly did. I was borderline in my Chadsvasc score but I wanted to err on the side of safety and asked to be put on them.
I've also had cuts and dental work etc without any problem and I don't bruise any more than I did before.
Unless your Hasbled score indicates otherwise or your doctor advises against it then I would seriously think about taking them. We are at more risk of stroke than the general population.
As Tracy mentioned have a look through the patients information on the AFA website.
Just to re assure you regarding bleeding. Anticoagulants do not thin blood so it won't just leak out. OK if you have an injury then it may take a little longer to stop bleeding but normal first aids methods usually work unless the injury was life changing or threatening in the first place.
I have been on warfarin fo 16 years during which time I have continued my normal carefree life hacking bits off myself whilst working on engines and car bodywork anmd never needed hospital treatment for any injury. Just this morning I notice that the 1.2mm sheet metal part I was forming for a project had started to go red in places (sharp corners ) but by the time I had finished the job that had stopped. (Still stung when I used the Swarfega mind)
"hacking bits off myself while working" love it 😂
That sounds painful Bob.
If there is any difference in my bleeding rate I have not noticed it. I have always bled little and healed quickly and since going on anticoagulants have not noticed a big difference other than being asked to come off the anticoagulant for some time before some procedures, and operations. My surgeon who did my Total Knee Replacement blames the anticoag for causing too much inflammation which meant I couldn't get enough mobility back in my knee and had to have manipulation under anaesthetic (MUA) 3 months after the initial operation to get the mobility I needed. Though I do know plenty of other people who have had to have this who are not on anticoags. I did do all the exercises frequently and religiously but still needed the MUA. Of course the fact that I heal quickly could also have something to do with it too. If you need the anticoag then I would take it but only you can make that decision.
I Was chadvasc 1 and was told I was low risk for stroke so no anticoagulant. I am in AF pretty much all the time and I have MS so have very limited mobility so I felt I wanted to take them. But cardiology refused until 2 months ago when I had a TIA.
I’ve been in the two half years, I see it as a bonus to be not having the stroke risk.I’ve cut myself a few times , mainly the cat! I don’t really see any difference in the clotting towhen I wasn’t on them
Oh our friends the cats lol. Probably testing the anti- coagulant 😊
I've been taking them for 10 years. I work in a medical role and use scalpels everyday. No accidents.My father had a massive stroke and believe me you don't want one of those.
Talk to a stroke survivor you will soon change your mind.
Sorry if this sounds harsh but so important that you take them
All the male lineage in my family have either died directly from a stroke or had severe life impairment because of one. Believe me, I'm more than happy to take them for the rest of my life. Whatever the outcome, at least I can say that I tried. I've had cuts, bruises, stitches, dental extraction without issue. Good luck with whatever you may decide.
I'm very active as well and have PAF.Been on them since August 2009 (Eliquis) and have had no sign of spontaneous bleeding ever.I suggest that you should be more worried about clots/stroke with our condition.
My family's history with this condition left untreated is testament to that.
They don't "thin" your blood but reduce it's ability to clot.
But I do avoid impact sports and ladders.
Like you I just didn’t want to go on them initially I was very reluctant However when you weigh up the risks of not taking them it makes sense to go down the anticoagulants route. I’ve been on them over a year now, Apaxiban, it’s been absolutely fine. To guard against the risks of a debilitating stroke, it’s worth it
Hope all this enables you to come to a decision
Jane
As a retired nurse who nursed many stroke victims, I am happy to be on an anticoagulant. Seeing first hand the devastation that a stroke has on a patient, and their family, made my mind up for me, plus a family history of strokes. I have paroxysmal AF and don't technically qualify for anticoags until I'm 65 but my brilliant EP thought it a good idea to start them as I had been going through a period of monthly AF attacks [for six months last year] after Flecainide PIP stopped working. This resulted in two emergency admissions to hospital which was quite frightening. I am relieved to be on an anticoagulant now. Only side effect for me is that it takes a little longer to heal if I cut/injure myself but nothing major🤞
Difficult to give a view, I would want to know how old you are, how often you have AF episodes (and whether they can stopped) and what your cardiologist advises. e.g. I am an active 67, I have Lone PAF with 2 episodes over 7 years and my cardiologist reluctantly accepts my choice of postponing taking ACs on CHADS score 1.
I've vacillated on every drug I've been prescribed, and have dumped most when I could, but wouldn't stop the anticoagulation.If it helps, I was told that dabigatran (Pradaxa) was more likely to cause an abdominal than a cranial bleed. It also has an 'antidote', unlike most DOACs, which might also reassure you. It's not great if you have acid reflux or difficulty swallowing though.
It's more expensive, so there might be a reluctance to prescribe it, though I didn't find that.
Hi kalgs. I’m chadsvasc score 1 and 54 years old. At present I’m advised against anticoagulants. As soon as this changes, through age or other comorbidities, I will not hesitate to take them. When I first got PAF 15 years ago, I was very frightened of the medications and would do everything I could to remain unmedicated for as long as possible. These days I am very thankful for my flecainide and bisoprolol as their benefit far outweighs any side effects. If you have AF and a chadsvasc greater than 1, the risk of stroke is not insignificant or a matter of debate - it is real, experienced and very disabling or deadly, so for me anticoagulants would be a necessity.
How long have you been on Flecanide & Bisoperol? & have you had an Ablation mate?
Hi Rhiann
How long have you been on Flecanide and Bisoperol? And have you had an Ablation mate?
I'm a borderline case and was told by an EP I didn't really need them, but AF is AF so I refused and stayed on them as I have the odd attack now and again. You don't need to play Russian roulette with strokes and I've never had an issue with them in 4 years I've been on them !
I insure my vehicles, property, and business interests against loss or damage. 20mg of Rivaroxaban daily is just another part on my insurance portfolio. The potential for loss or damage to my family and business were I to have a stroke males the use of an anti coagulant for the last 17 years a simple decision.
I almost have the opposite problem. Following an ablation in January I have had no arrhythmia since. I am worried that I will be taken off anticoagulants, I rather like the sense of security they give me.
Hi - I’m in exactly the same position with a chads score of 1 and age 67/male. Paf about once every 2 months. I’ve stayed OFF them thus far, partly because I have haemorrhoids which occasionally bleed and worry about that. I guess it’s all a bit of a gamble. 🙃
My amateur take is this:
Until you get to a stage in life where you are considering taking anti-coagulants, you never thought that a blood clot could happen to you. Once the realisation hits that you are one of those at risk of a stroke or heart attack, then taking an anti-coagulant seems obvious; you are grateful to your consultant for recommending Apixaban, Rivaroxaban or one of the modern NOACs.
Again, here is my amateur “take”:
There are two types of bleeding major (internal), and minor (nosebleeds, longer time for cuts to heal). It seems that over time more-and-more people experience minor bleeding, after a year of taking Apixaban I had 5 episodes of nosebleeds (learn what to do if you have one – it’s not so obvious). Solution, simply reduce the dosage of the anticoagulant – no further problems for me.
The words of my consultant still ring in my ears, “I am more worried about you having a heart attack, than I am about your Atrial Fibrillation (that was before he cured AF with a cardioversion) – keep taking the anticoagulant”.
I used to be on warfarin but was taken off it after a successful ablation. However, about 9 months later I suffered a TIA. Thankfully minor, but scary. I was immediately put on clot buster drugs, then onto a NOAC. Because I have had stomach ulcers in the past, they put me on Pradaxs (dabigatran), which can be reversed in the case of a nasty bleed. I have had no problems with bleeding or side effects, so I am very happy to be back on anticoagulants. This is not advice, just my experience. Good luck x
I was on warfarin for a while and never had any issues apart from the odd bruise if I’d been working and not watching what I was doing.!! After 3 pvi ablations I was eventually taken off my warfarin because of a nil Chads score and my age 51 at the time. But I have heard that us Afibbers are still at higher risk of stroke even if you’re Afib free.! So when I can next see my cardiologist.? I will be asking him about AC’s and whether it would or would not be worth starting again as iv read so many different things regarding this subject.
I want to agree with CDreamer concerning anticoagulants. For approximately five years I have been taking anticoagulants due to paroxysmal afib. About three years ago I had a deep cut on my chin that needed stitches. There was a great deal of bleeding however the bleeding actually stopped on it’s on before I got to the doctor for stitches. I’ve also had several small cuts or scrapes with bleeding but bleeding always stopped without medical attention. I take Xarelto regularly and would be concerned if I did not take it. But each of us must make our own choices. Wishing you the best.
I think you also have to take into account the risk of stroke if you don't take anti coags. I didn't know I had AF until I had a stroke, wish I'd known before, I would have done anything to avoid the stroke.
I have been on warfarin for 10 years following a stroke, and being told I had AF. Odd cuts, and dental work are not a problem. But beware of adverse reactions with other medication. My GP prescribed Fluconazole for a mouth infection, even though he knew what medication I was on. After about two weeks I developed severe bruising on my arms and body, so I went to A&E for advice. They tested my INR, (my target range is 2.0-3.0), and it was 26.0. They had never had such a high result from anybody. I was immediately kept in for three days and put on a 2.0 litre drip of vitamin K.
I am back in NSR after my fourth cardioversion a few weeks ago. These last anywhere from 6-18 months before I end up back in persistent AF (which stays until the next cardioversion). Even in normal rhythm i maintain my anti-coagulation (Rivaroxaban). I was in my 30's when I had to pick up my 56yr old Dad (the age I am now) up off the floor and rush him to the hospital after his major stroke from a clot caused by his Afib (that he didn't know he had). He never fully recovered and was not the same man afterwards. That was enough for me.
I am an active person, I run, cycle, (road and mountain bike) and lift weights and have had no problem with the anti-coagulation. The only changes I made were to back off the gnarly downhill trails and stop the rock climbing, simply because the risk of injury is unacceptably high. Other than that it's business as usual.
I have noticed that minor cuts, nicks, shaving cuts etc. take a bit longer to stop bleeding and will start again quite quickly if you bump the area and don't have a plaster.
Everyone has their own priorities but for me it is the lesser of two evils and I have a level of control over the activities I engage in.
I was really fit and told by an EP that I didn't need an anticoagulant as my high heart rate was due to aerobic fitness; 18 months later I had a stroke.
Bleeding. I take dabigatran anticoagulant. I pass a tiny amount of blood in my urine about twice a year, but I have an enlarged prostate and take finasteride. Those two medications together can cause the that bleeding. In normal times I clear scrub in a nature reserve, using a billhook, rip saw and, professional hedge cutters. The only time I've been in A&E due to bleeding is when I had a 20mm flat polyp removed in my colon; seven days later the clips and scar gave way - the bleeding stopped on it's own.
Before I had an anticoagulant I was always told that I could bleed to death if I bit the haemangioma on my tongue in an accident - I later survived sliding up the road on my back at around 70mph. The haemangioma is a slight worry as they can also occur in the wind pipe and brain. That can be a problem if intubated or thrombolysed. Fortunately I fought off being put on a ventilator and, later they did a second CT scan before thrombolysis.
Hello, I have been on Apixaban for a few years. No spontaneous bleeds. I do lots of garden work, cutting and sawing, me as well as the trees, no injury I couldn't cope with at home. I did stick a knife in my hand trying to open something in the kitchen, lots of blood, applied lots of pressure. Went to A&E, they said I had stopped bleeding myself and glued me back together. Just keep a little kit handy for accidents, Melolin Dressing Pads or ordinary cotton wool, elastoplast roll. I even had some 'liquid skin' in my kit but forgot I had it! So highly recommend the peace of mind given by anticoagulants and be more careful than I am...Good luck!
I’ve been on Xarelto for 4 years with no side effects save for I bleed a bit more when I’m cut or have a nose bleed. I haven’t had any limitations on my life.
I had similar concerns. I'm a 55yo.active female nurse...kiteboarder, mountain biking etc. I have been taking zarelto ( a noac) for over 1 year withno signs of any adverse bleeding issues. Mild increase in bruising but bleeding time is normal. I am very concerned about stroke risk with afib as both of my parents and 3 grandparents had catastrophic strokes. I had an ablation in Dec. 2020. So far it looks like it worked. I will be in the "oceans" study next year to work toward stopping anticoagulant use 1 year post-op from the cardiac ablation. Time will tell...
I, too, was very very reluctant to take anticoagulants; however following my last episode, my husband and my doctor said “you must” ... l have PAF as well ... l decided upon Eliquis ... zero side effects ... none! In fact my skin looks gorgeous since l started taking it ... my melasma completely cleared up. I cannot write anything about any other than Eliquis... l find it to be an excellent product. Best, Jan
As for 'spontaneous bleeding', I've not had any of that. I've been taking Apixaban for over a couple of years now, and the only thing I've noticed is occasional red stain when I blow my nose too vigorously, but I always have had a tendency to that anyway. I'm a hand tool woodworker, and regularly cut fingers/hands etc. They always stop bleeding after a bit of pressure, or a sticking plaster (what ever happened to Band Aid?).
The good news about the newer anti-coagulants is they now have a reversal agent that works almost immediately to restore the clotting effect. To me that is why I made the decision to take them with a CHAS score of 0. My EP mentioned someone in their 40s like me with a low score woke up one day and couldn’t talk (had a mini stroke). Also, I have AFIB daily from 2-12 hours so it relived anxiety in a huge way!
Only one had a reversal agent I’ve been told by medics
The FDA approved andexanet alfa (AndexXa) on May 3, 2018. It's the first and only antidote to reverse bleeding in people taking apixaban (Eliquis), rivaroxaban (Xarelto), or edoxaban (Savaysa). Another newer blood thinner — dabigatran (Pradaxa) — already has an approved antidote called idarucizumab (Praxbind).
I stopped taking them a couple of years ago but re-started last year. I stopped because I had heard bad things about Warfarin --although mine is Apixaban -- and also because I didn't want to have to remember to carry that card around with me .
I started again when the hospitals were overwhelmed by the pandemic. Just didn't want to be No 19 in the queue with the ambulance, if I did have a stroke or whatever. Could deal with the bleeding more easily than with that. I may stop again when all this is over, because I am taking so many tablets! But I haven't decided about that yet. It might be better to at least take them until this pandemic finishes.
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