A recap of my situation - I have had PAF for 16 yrs, about 20 episodes of it. Having been cardioverted most times I’m now on rate control and don’t need to go to A and E anymore - which is brilliant. Anyway I was told by my EP that if an episode lasted more than 4 days I should start anticoagulants - and a letter was sent to my gps to that effect. I have discussed anticoagulants with my EP and drs for years, some were for them, some said as my chadsvasc score is 1 ( for being female) I should hold off - but today, 4 days into an episode I decided it was the right time to go on them for good. Phoned the gp this morning, got a phone appointment, gp said he didn’t believe they were necessary and wouldn’t prescribe. I was quite irritated because I believe it is the right time for me - others have stated I should have been on them long ago! Anyway I phoned back and asked for a second opinion and amazingly got a face to face appointment. This gp explained to me that I was no longer eligible in our trust for anticoagulants as there was no proof (as a chadsvasc 1) they would do me any good. I explained that I believed my PAF had moved on to something more persistent, and I pointed out the letter from the EP on my file but it’s non-negotiable - I’m not eligible. Im absolutely staggered. Is this new guidance or to do with cuts in our area?Has anyone else heard of this? Thanks
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This sounds fishy. Doctors are usually very keen for patients to start anticoagulants .Right at the beginning of my heart problems I was 'told' we will not let you ourt of the hospital unles you agree to anticoagulants!!I had had a very smal TIA but did not have Afib.
That is really interesting - so the guidelines ARE that I should NOT be anti coagulated. It says 2021 next to it so I wonder if it changed to that last year. I always thought that the guidance was that you should have a conversation with the patient about the risks for them.
It has now come more into line with the guidelines from the European Society of Cardiologists which say that if the points are for sex and age only ( no comorbities) then anticoagulation can be deferred. The point for being a woman is not agreed upon universally.
I like this new guideline. I hope the US is considering this. I am female, 73 with controlled high blood pressure, so I would be a 1 instead of 3. I do not want to take anticoagulants. Healthy active grandma with only one episode this year.
Well my own cardiologist adhered to the guideline. I had a score of two , one point for being a woman the other for being over 65 years old. He said I could stop the anticoagulant prescribed by the hospital cardiologist ( who obviously didn't give tuppence for the new guideline ) after I had had an afib attack following major bowel surgery. I was only too pleased as I was on Pradaxa and it was giving me indigestion. A year later a I had a TIA more than 6 months after the last afib episode. This brought my score up to 3 which is actually what your score is because of your blood pressure. I started Apixaban immediately.
Well, I was glad that my docs didn’t think I needed an anticoagulant until I had a minor stroke. Now on anticoagulants, no obvious extra bruising or anything.
They are EXTREMELY expensive my out of pocket for a month after insurance is $572 a month. Luckily my medication manufacturer has a patient’s assistance program which I qualify for been getting them free for 3 years. Each year I have to reapply. I would have stroked out if it had not been for this program because no way in hell I could afford it.
We know the CHADs system of measurement is not a precise science and I have heard that scoring 1 for being a member of the fairer sex is not deemed to be as significant as scoring 1 for diabetes, 1 for hypertension and 1 for congestive heart failure but I’m not aware of anyone with a score of one being refused an anticoagulant. In my case, having had two ablations and not had an AF episode for over a year, because my BP when taken at the hospital was borderline, my EP suggested I should stay on my anticoagulant “just to be on the safe side”. I’m far too much of a gent to ask how young you might be, but if you are over 65 and IF you take medication to control your blood pressure which would otherwise be high, then your score is at least 3. It will be interesting to hear what others say……..
When I was first diagnosed my GP wanted me to take anticoagulants but my cardiologist said not necessary, I then saw an EP who said I should be on them so he prescribed.
If you click on link for chadsvasc score in the link bantam12 cited it says this"One recommendation suggests a 0 score is “low” risk and may not require anticoagulation; a 1 score is “low-moderate” risk and should consider antiplatelet or anticoagulation, and score 2 or greater is “moderate-high” risk and should otherwise be an anticoagulation candidate.
I am really surprised that they are dismissing your request with letter fro. EP as evidence.
Technically your Chadsvasc score is zero as the +1 for being female only comes into play when you have a score so at 55 (I checked your early post) with no other co-morbidities you don't have one.
That said I would go back to your EP and explain to him/her what has been said if you are worried. I make no comment on the desirability of anticoagulation in your case, just explaining how I believe your GP is seeing things.
As someone who suffered a stroke nearly two years ago, which has completely changed and ruined my life, I am dumbfounded too! My stroke could have been prevented had my GP prescribed Apixaban or similar many years ago, instead of just telling me that aspirin once a day was fine! I was regularly told I was out of sinus rhythm at consultations but 'nothing to worry about'!
If I had been actually refused an effective anticoagulant I would be seeing them in court at the moment!
I don't understand the 'technical' medical reasons why they won't prescribe this for you, but obviously you need to be seeing a specialist who can give you advice and explain it.
Awful! They have all known that aspirin is ineffective and carries a high risk of stroke compared to modern anticoagulants like Apixaban etc. A cardiologist who doesn't know that should not be working any more in my view. Any stroke can be life changing if not lethal.
Agree! He was concerned about my needing breast surgery and felt I could wait until after my surgery. But, knowing now what I know that surgeons work around those on anti-coagulants, it would have actually been easier to be off of the AC for two days, than a week off of the aspirin. Plus I could have resumed the AC immediately after my surgery. My new cardio said, "There was no good reason for me to not have been on the AC, and had I been I would not have had my stroke!"
I've read that in the UK there are strict NICE guidelines concerning this and surely these will have been followed. Anticoagulants are not risk free, of course, so that - rather than cost - would be the determinant, I would hope.
I think I'd tell your GP, who refuses to give you them, that you'll hold him responsible should you have a stroke. Is there a different GP you could see, just to get another opinion?
Thanks Jean. I did get a second opinion, but it was the same. They are following guidance. I will go back to me EP about it although being a different trust, I’m not sure the EP can prescribe.
I am with an EP in a different trust to the one in my new area and he does prescribe for me, and my GP goes along with this. If the GP won't budge on this, change your practice. You need a doctor who will listen to you. Good luck.
Unfortunately early this year my Cadvask score was reviewed, I can only think this is a a covid-prudence audit. It was found to be 0 thus I’ve been taken off the anticoagulants I was told 2 years ago will stop a stroke.
You and I are rightly bothered about this as it flies in the face of what I was told 2 years ago when I was immediately put on them with a printed leaflet explaining “AFib”
Two months on and I’m still trying to get my head around it. I pay for prescriptions and thought I was being protected by the system which now say it’s not necessary.
I am confused.
I have try and use the communication system Engage Consult to get some answers but as I work nights I’m asleep all thru the 6-11am period it “open” adding to the frustration.
However yesterday I stayed up and got a message thru to admin a have been told to expect a pharmacist to call Monday to guide me to enlightenment (hopefully) in the crazy world and politics of post-covid-medical-prudence.
I hope you chase up and get some answers to your worries about your missing life-saver. I’m asking about why I’m on the beta blockers still as my resting heart rate is always bumping along the bottom of the 40’s.
Good luck and use your skills of calm communication to resolve this thorny issue.
Very worrying. Would it be an idea to contact your EP and report this,as GP is directly contradicting a consultants opinion?Could you contact GP practice manager and wave the letter in their face,briefly mentioning litigation if necessary?
I believe a GP can refuse to prescribe a medication if they believe it’s not in the patients best interest, even when recommended by a specialist, this has happened to me in the past.
I would ask the GP to put it in writing so that if the worst happens and you do have a stroke you can sue the practice. Also go back to the consultant or contact him and ask him to write to your GP, and if that does not work change Dr's. for someone who will listen to a consultant.
Anti coagulants are expensive but far less so than a stroke for the NHS as most people require an ambulance to go to hospital for weeks, if not months, and require care for a long time afterwards.
I had a CV in October 21 but last month tripped back into Afib, so waited a few days and started taking my apixaban again ( I had some left from December when I stopped). I went to see my Cardiologist who was pleased that I was back on them as he explained the world wide advice is to be on them for a month before a CV, which I’m having soon hopefully.
This is the Cardiologist that explained that when we are in Afib, the heart does not beat strongly enough to clear a small pocket on the side of the heart, so the concern is that once it’s back in sinus rhythm it might clear blood from that area that has congealed into your system, thus creating a risk of a stroke.
So on that basis, I’d want to be on anti coagulants after a week of constant Afib.
Given your CHADS score, one can make a very good argument that in your case the risk of anticoagulants (thinners) outweigh the benefits. That said the CHADS is somewhat simplistic not taking into account other stroke factors like the obesity you mentioned. Obesity is an independent risk factor for stroke.
So arguably, you could make that case that you have an additional stroke risk outside of the CHAD.S Does that mean the benefits of thinners still outweigh the risks? I'm sure you will also get different opinions here.
But in any event, if you haven't already, committing to losing weight might be the most important thing you can do. Your stroke risk will be lower and no guarantees, but it might end your afib episodes altogether.
But daily thinners aside, it does seem odd that you're not put on thinners at least during an afib episode and for some time after. I always was even when I was not on daily thinners. That is basic protocol at least here in the US.
You are right James. Losing weight would certainly help me. Looking on the bright side - now that I am in AFIB with a heart rate of 130 bpm the weight should fall off me - I couldn’t lose anything in sinus with a beta blocked rate of 45.
I have every sympathy with your predicament, albeit from another direction.
For me it has been about wanting to get to your position of intelligent, informed patient discretion, with punctuated use of anticoagulation.
No one dies from AF of course. We die from stroke or heart failure, or similar complication.
The clinical dogma in respect of AF anticoagulation has done a complete 180 over the past decade. So, a lot of our AF 'treatment journey' depends on when we were first diagnosed.
Time was, anyone with AF would be Warfarinised at the drop of a hat. And that was no small lifestyle impediment, in terms of diet and INR testing etc.. Ironically, with DOACs and antidotes, without vitamin K complications, which make anticoagulation a lot easier, the medical consensus is presently that bleeds are a least as much of a risk as TIAs, strokes etc..
Unfortunately, particularly in the public healthcare arena, medical practice is the product of a utilitarian clearing solution to an elaborate national death/cost minimisation problem.
Benefit to any individual patient is almost entirely coincidental. Medics will put you in a broad 'box' and and prescribe for you in a way that no one could get them for doing later.
Right now that means, for many people (who were previously on anticoagulation or under pressure to get it for AF episodes exceeding 48 hours) that they may not get anticoagulation at all, until they score high enough on CHADS or are undergoing clinical cardioversion.
You were, retrospectively, fortunate in having an enlightened approach to your interrupted use of anticoagulation during AF episodes at all. But that was a legacy of a period in which anticoagulation was the default and you were 'allowed out' on good behaviour as it were.
Much AF is paroxysmal. Whereas, the medical view on anticoagulation (and much else) is often broad brush. All or nothing. The first casualty of 'evidence' (and litigation) is judgement.
So, in the new regime, the dogma is no one should be on DOACs without very good reason.
The rationale may be economic, because it is a lot easier to prescribe and achieve compliance with drugs that don't mess with your life so much, which heightens demand and impacts GP budgets. But, then again, DOACs have got cheaper. And, while it was not cheap and was a hassle, even warfarin is a less costly option now, with home INR testing and administration.
So, while I would not rule cost out, I think it likely that the claimed change is 'evidence-based'.
Consequently, apart from legacy cases like yours, the newly diagnosed are mostly either put on chronic anticoagulants or not. And this depends not even so much on the 'mood of the chef' as it used to, but just the numbers.
This is every bit as dumb and inflexible to my mind as the old view (it is changing) that it makes no difference (to your death prospects!) whether you are on rhythm or rate control. For my part it always seemed to make a world of difference to me, in terms of quality of life.
Blanket prescribing never makes sense to individual patients. Were you in AF and due for cardioversion in hospital you can be sure no medic would touch you before they had done a TOE and probably had you put on anticoagulants too. Because the risk is that after being in AF for any time we may have got a thrombus in our LAA, which the shock of cardioversion could shunt somewhere it shouldn't. So, why is it OK to cardiovert at home with no cover?
There is no practitioner to carry the can for it, but at home if you drift in and out of AF for extended periods with some frequency (perhaps 'silently'), you may not get anticoagulation for that highest risk period of transition at all, unless you are getting it all the time. It's mad.
And support for interrupted rather than chronic use of DOACs, as you have now, on a PIP basis, under the 'no-anticoagulants-by-default' policy seems also to be in its infancy.
The good reason for this is lack of sufficient data to demonstrate efficacy and benefit from punctuated use (there are just too many variables anyway). The bad reasons are: prescribing expediency, GP back-protection, parsimony, and reticence to display a modicum of common sense. A creeping 'computer says no' dogmatism in prescription, irrespective of the patient in front of the practitioner, is endemic across NHS medicine. We have become commoditised.
If, like me, you have a low CHADSVASC score but just want for comfort to continue to have Apixaban, or another suitable DOAC, to hand at your discretion (I used to have Heparin syringes too!) for AF bouts and resumption of NSR (by any means natural or interventional), you will not be given these routinely now - until you have a TIA or stroke. Then it's all OK!
I half suspect this policy is a good recruiting-sergeant for the ablation specialists, who know most about paroxysmal AF but make their money from the knife, and not hand-holding: 'If you want to avoid this risk and hassle, just have an(other) ablation. I can't offer you DOACs'.
Which of course guarantees that a significant proportion of us WILL now get a TIA or stroke needlessly. And we have to hope that on some metaphysical accounting of these things we shall be fewer than those who might otherwise have had serious bleed-related morbidity.
So, if you don't like being a number in this elaborate lottery of statistical/practitioner bingo, it's probably best to opinion-shop, educate your GP about risks particular to your specific situation and category of AF, and tell them about impact(s) on other aspects of your health.
There is a valid argument that our AF substrate does not disappear with passing paroxysmal episodes but persists the whole time. It may even be totally refractory to repeated ablations.
And it is possible throughout to have overnight and 'silent' episodes.
It is not an argument I favour in my case, because I have 'lone' AF, I think I know when I am in it, and that the main risk to me is then and, particularly, coming out of it. However, arguably, that same substrate (whatever it is, and in other cases) may exert adverse cardiovascular and haemodynamic effects all the time.
This, as you maintain, would counsel (with natural aging) a progressive transition to a more prudent regime of chronic anticoagulation, out of an excess of caution, absent demonstrated bleed risk. And this evaluation may be only coarsely expressed in clinical scoring matrices. It should, arguably, be left to some degree to patient discretion and balance of peace of mind.
Alternatively, if you are comfortable with any bleed risks, or willing to find out by trial and error, one might (I suppose) recount disquieting symptoms that a GP could not readily rule out as possibly being signs of having had, or suffering, an incipient TIA. That should do it.
Well, I cannot comment as to how normal this is where you live, cause things certainly are different in the UK. I can safely say that your not being on an anti-coagulant at this point in time here in the US would be ill-advised. I was a Chad 0, when I had a very minor stroke, and a Chad 1 when I had a TIA followed by a massive stroke. I was not on an anti-coagulant and had PAF. I don't know what to tell you as to how to get a script. Would another EP be of any help to you? Getting a script for anti-coagulant here would not be a problem. Sorry that things are seemingly so difficult in the UK.
This sounds very odd. I was diagnosed in 2018 and was then CHADS1 but was constantly offered anticoagulation. You should speak to CQC about this and write a formal letter to the surgery asking them why they have overridden the EP. Consider changing your surgery if that’s an option.
I am amazed that a GP would refuse anti-coagulants for someone like you. In your shoes I would contact my EP and get them to prescribe. Once they have done that your GP cannot refuse repeat prescriptions.
I wasn't refused anti-coagulants but I did have trouble getting the ones I wanted. I was prescribed Warfarin and was unhappy with it because I kept slipping out of range - even though I ate moderate regular amounts of greens and stuck to all the dietary advice.
Finally a dose of antibiotics put my INR way off course and I asked for a NOAC/DOAC. My GP (who I like enormously btw) just threw up his hands and said no way because the local Clinical Commissioning Group only funded NOACs for patients having "serious trouble" with Warfarin. It was too expensive at £70 per month as opposed to pennies for Warfarin. (Although all the INR checks must cost a pretty penny).
So I went to see the EP privately- because it was a long time till my next appt. He agreed Apixaban would be better. The next thing I knew, I got a call from the arrhythmia nurse who referred me to the hospital Anti-coagulation clinic. They prescribed the Apixaban and said that once I'd been prescribed it, the GP was obliged to continue with it. They also said loads of people from my practice were on Apixaban! And now so am I.
Meantime it might be wise to seek advice on taking aspirin - if you're not already - and also omega 3, instead, if the anticoagulant refusal is absolute. . . .
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