I would like to know if everyone diagnosed with paroxysmal afib is on blood thinners? My EP wants me to start taking xeralto but I am reluctant (reason is a liver leason) however I am on baby aspirin. My afib episodes are short, couple of minutes only but I have ectopics a lot. My doc's explanation that women are at higher risk of stroke does not convince me that xeralto is necessary.
Blood thinners?: I would like to know... - Atrial Fibrillati...
Blood thinners?
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roma60
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BobDVolunteer
AF causes 20% of all strokes and 80% of the least recoverable ones. AF makes us 5 times more at risk of stroke. Anticoagulants ( they don't thin blood) reduce that by around 70%. You do the maths.
Aspirin is ineffective at preventing AF related strokes yet causes more injury due to internal bleeding than antiocagulants. Again you do the maths. If you doctor has done your CHADSVASC score (stroke risk) and says you need it it then please take his./her advice. You can't undo a stroke.
That said HASBLED is to be considered alongside CHADVASC. It does not contra it but suggests things that may need to be addressed first.
If people want to call them blood thinners, try to stop being all high and mighty by correcting them.
I find it insulting that even doctors use the term presumably because they think we are too ignorant and stupid to understand. It actually causes problems as people imagine that their blood gets thin and might leak out. It won't.
Point taken. I just think when lots of people come on here in a stressed and anxious state, they find it easier to write and understand blood thinners and what is really important is the things that are going on with them rather than using correct terminology. It is so entrenched in medical and general language that I understand it is not correct, but so it goes for lots of things in life that aren't perfect. Let them say blood thinners or anti-coagulant I say. They know what they mean. You know what they mean. You know what I mean?
Blood thinners are a very specific drug only given in very rare circumstances to patients suffering from blood thickening conditions.
All the best.
Roy
Hi Roy,
It's all in the context in which "thinners' are used.
Roma60, the OP, used the term just fine, because it was in the context of Paroxysmal afib. At least according to an MD I respect and am good friends with.
So I asked this doctor, what term do doctors use when they talk among themselves -- thinners or anticoagulants -- and what term they used when they talk to their patients. The answer was interesting.
According to this MD, they always use the colloquial term "thinners" among themselves, but use anticoagulants with their patients. And the reason was also surprising.
Apparently, 'thinners' may have a negative context to some patients and it even sometimes gets confused with getting "thin" as in you are overweight.
The doctor in question practices in the US so Terminology may differ elsewhere.
-- Jim
See my latest post down at the bottom.
All the best.
Roy
Yes, I was replying to that post. One of the points was the use of the term is contextual.
Jim
Sorry, but that's not good enough for me. If people don't want to promote misconceptions they should use the correct term. Even Dr's.
All the best.
Roy
The short answer is No. Not everyone with afib is on thinners, nor IMO should they be.
I had afib since my late 30's and didn't start with thinners until my 60's. Then, only as needed during an afib episode. As my afib episodes became more frequent and longer in duration, I went on daily thinners in my 70's.
As a starting point, you can find your stroke risk with the CHADS2 score. From there,other factors to consider are how frequent and how long are your episodes, how aware you are when you're in afib, other health conditions and your lifestyle. For example, when I was active in motorsports I felt my risk of an accident/bleed outweighed the potential benefits of a thinner.
In my 60's, my cardiologist sat me down and gave me the hard numbers, ie my stroke risk with and without thinners. We both agreed, even without the motorsports, that I didn't need them yet. Have your doctor give you the numbers or find them yourself.
That said, two people, with identical CHADS2 scores and with identical health conditions, lifestyle, etc., could reasonably come to different conclusions as to whether or not to take thinners. And two doctors with the same patient can also reasonably come to two different conclusions.
Find out your CHADS score. Do your homework. Listen to your doctor and get a second opinion if necessary. And come to the best decision for you.
Jim
Agree with BobD. Also Stroke can happen some time afterAF so taking anticoagulant intermittently doesn’t protect.
Hiya roma60,
I was diagnosed with paroxysmal AF in Jan 2010, aged 65. From 2007 to 2010 I had been on statins and a blood pressure med, Ramipril. With the diagnosis came the added meds of Bisoprolol and Warfarin.
I have been on both Bisoprolol and Warfarin ever since, I self test ( for my INR) at home with my own device and on the rare occasions I need to I adjust my own doses of Warfarin I do so myself. I humour my INR clinic at my GP's surgery and my GP by feeding them my INR test results when they tell me, but, frankly I don't need them. Generally my GP surgery at the present is as much use as a chocolate fireguard. I am in range 90 to 95% of the time usually dipping out of range when I eat something I shouldn't or when I need to stop Warfarin altogether pending any sort of medical/surgical proceedure, then I restart.
I wonder if you can say, hand on heart, that you are NOT asymptomatic ! In other words how do you know you are not having episodes that you just simply do not know of or that you are unaware of, no symptoms at all. I am and have it in writing from my original diagnosing consultant. No way would I discontinue any of my meds, especially Warfarin. Of course you can refuse to take xeralto, do whatever you like, its your call ..... or even start it and discontinue, or treat it like a pill in the pocket .... whatever, so long as you are ready for any consequences.
John
mrgwair567 in reply to
Well written John!
I, like you have PAF. The thought of a stroke terrified me so when I was put on a blood thinner i felt relieved. I have had no bad effects from it and take it exactly 12 hours apart, every day.
Hi, my CHADSVASC score was one for being a woman so I waited seven years with my AF and started on anticoagulants at 65. Cardiologist said my risk was low till 65 as blood pressure fine, not overweight and heart OK, no other conditions. So i put it to the back of my mind and forgot about it, even during any episodes. Being 65 put me at level two so i requested them from my GP. All the best.
Those with AF have a 40% higher risk of developing dementia. Taking anticoagulants cuts this risk: medscape.com/viewarticle/90...
Use of anti-platelet drugs such as aspirin appeared to increase the risk even more.
mjames1 has covered it very well IMHO.
I am 68yo, active, take krill oil & garlic daily, a pint of water am & pm as well as teas etc and have no diagnosed comorbidities. I have declined 'blood thinners' for 6 years. My cardiologist understands and prescribed me Edoxaban as a PIP if I have an episode lasting several hours in the future. Will reconsider this approach in my 70's. Part of my decision was that I have had a 'stomach weakness', for 20 years don't know what it is but aspirin made it sore, peptic ulcer??
If you start taking them I would push for either Apixaban (one of the new ones) or like carneuny go on warfarin (if you prefer old tried & tested and derived from a natural ingredient clover) & buy a self monitoring machine (Roche).
My decision was to take the anticoagulants. I stopped after 12 months following a successful ablation (I thought), then had a TIA so couldn’t get back on them quickly enough. In your case the liver lesion is a consideration and possible contraindication - what does your doctor say about that?
The risk of stroke with AF is not exaggerated and there are many benefits to taking anticoagulants and many are quite frightened by the thought of taking them, I certainly didn’t want to take them and resisted for a long time.
In my experience, most specialist tend to see their speciality only through the lens of their speciality so what say your doctors treating your liver? Monitoring how your liver clears the anticoagulant would be important I imagine so what monitoring and how often?
It’s not always an obvious choice and balancing differing needs is never easy, as I know only too well so if we can help you make that choice, great. There will be other factors here such as age, general health, co-morbidities such as BP but at the end of the day you have to consider which is worse - you can stop the anticoagulants and look at other means of lessening your stroke risk, but you can’t undo a stroke.
If you haven’t seen it before - you may find this calculator helpful
47 yr old and On Xarelto. I started 2 years ago. On it because I work in the medical field and have seen what a stroke does to people. If I can prevent that, I’ll take any substance known to mankind. I’m on Xarelto strictly for preventative measures. I have zero side effects from it. I do bruise very easy. On St. Patrick’s day my daughter pinched me for not wearing green. It wasn’t even hard. She’s only 8. I had a bruise darker than midnight for a week. I’m fearful of getting injured and having a bleeding issue. That part of Xarelto sucks. But having a stroke sucks more than the fear of bleeding out and bruising.
It's down to a calculation that your doctors will do. If you have liver issues, it might not matter. You'll be tested regularly while you are on the anticoagulants, for sure. My friend was given warfarin despite his liver problems (before the days of the modern drugs). He's fine.
When I looked at the clinical studies, aspirin was shown to be about 25% less effective at reducing stroke compared with warfarin and the modern drugs, so it's not the usually given drug these days. It also carries more risks:
nice.org.uk/news/article/of...
Steve
I had a stroke, luckily thrombolised and no after effects. BUT, on subsequent investigation it was discovered I have Afib and was put on an anti coagulant, Edoxaban. I was so lucky to get my stroke treated within the 4 hour window and avoid the devastation it can cause. I'll keep taking the tablet, never want to go though that again.
I used to be on Clopidogrel from years ago but recently told this is not effective enough as I need it long term so now take Apixaban no real issues
Ou may not feel when you have episode the only ones you know is by feel or ecg - if your clots build up over time the last thing you want to do is throw one of god forbid your next symptom was worse
Aspirin is not considered suitable and depending on age, health generally then to live with the effect of stroke is not advisable
Sorry to be a scaremonger but the odds are stacked and like a game of Jenga which I’ll gladly play please think seriously - your medics are well trained, you might not like what they say but….. I’ve had a DVT before that they didn’t check for when I begged while on Clopidogrel (13days later they did check ) I thank my lucky stars it didn’t break off, fixed with injections and Riveroxaban.
I am also on Xarelto. Like others, I resisted taking them for quite a while as I thought they were blood thinners. However, that isn’t what they do, they are anticoagulants. I, too, have worked with people who have had a stroke and don’t want that to happen to me if possible although I know there are no guarantees. However, I don’t have your liver condition but your EP should be able to advise you about how safe Xarelto would be for you or you could get a second opinion.
A lot of good comment here about anticoagulants and paroxymal afib.
Balance of risk. Roma60 has a liver lesion. Does this predispose to bleeding therefore is a bleeding risk??
I do not know. it is a question worth asking, knowing that doctors will downplay the risk. Make sure the evidence is less than five years old, because the anticoagulant world has changed a lot recently.
When I briefly googled I found this, readable, open access article 2018. Oral Anticoagulation in Patients With Liver Disease
sciencedirect.com/science/a...
To my mind, at present, the stroke risk of paroxymal afib is high, and there is no added danger in a liver lesion, therefore the question is which anticoagulant. Since the newer anticoagulants have problems with the liver, I would also question the choice. As the article says about newer anticoagulants: " Because all currently approved OACs undergo metabolism in the liver, hepatic dysfunction may cause increased bleeding."
Totally agree with Bob. It's a no brainer.
The anticoagulant I take daily, Warfarin, is my best friend. I have Permenant, though silent and asymptomatic AF. A few years ago I accidentally somehow cut open my leg. The corduroy trousers I was wearing were undamaged but I had a flap of skin, 2" x 5" through which blood poured out, despite the cut being near my shin bone. I was in hospital for three days as a result, and then had my wound dressed by local nurses 3 times a week, until there was no sign of blood on the removed dressing. Throughout all this time I continued to take my anticoagulant to lessen the chances of having a stroke.
I had a TIA six months after the previous afib attack so taking them as a PIP is not reliable. Why don't you ask your consultant why he prefers Xarelto to Eliquis and how taking either might affect your liver.
Hi Roma, I didn’t like the idea of having to take anticoagulants when I was first advised to but I’m glad I did. Because As time went on my Afib episodes became longer in duration which probably put me at a greater risk of stroke than before.?
I was on them around three years+ but after 3 ablations and a big improvement in symptoms And a nil chad score I was advised to stop taking them.
You may only be on them temporarily?
If I was advised to start them again then I wouldn’t think twice.!! Strokes from AF can be more damaging than others. take the specialists advice, they have your best interests at heart and know what their doing.
Best wishes roma, Ron
hi ive chads vasc score 0 im coming 62 ep says no anticoags until 65 but i would like to be on them now.
busulfan (Myleran)
chlorambucil (Leukeran)
hydroxyurea (Hydrea)
interferon alfa (Intron A)
ruxolitinib (Jakafi)
Are all blood thinners.
Also...
Selective serotonin reuptake inhibitors: These are typically used for depression, but they may also help reduce itchiness.
JAK2 inhibitors: These help block a mutated JAK2 gene from producing too many blood cells.
Imatinib mesylate: This is typically used for leukemia, but it may also help decrease spleen size and reduce the number of phlebotomies a person needs.
I think there is no suggestion that you are being asked to take any of these?
All the best.
Roy
All I can add is that I am scared of what afib can do to me over the long long term but terrified of how quickly life could change immediately with a stroke. My choice to take anti-coags/ blood thinners as someone with PAF is couched in these fears.
You are gambling with your life if you don't take a blood thinner.
My sister in law had AFib and her doctor recommended an anticoagulant. She declined and chose to continue her “baby aspirin” which she felt was effective. It wasn’t. She had a massive stroke in the car outside the emergency department. She was left with one side paralyzed and lived for another 10 years. I have AFib and am on an anticoagulant with no side effects.
Hi I have liver cirrhosis and on xeralto because of AF, with no problems. Just make sure you take the xeralto with a meal so that the drug is absorbed properly. My liver cirrhosis seems to be improving as well since I lost weight and stopped drinking.
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