New Anticoagulants v Wafarin - Atrial Fibrillati...

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New Anticoagulants v Wafarin

CDreamer profile image
92 Replies

The question has been asked in another thread 'why is there no debate about new anticoagulants v Warfarin on this site?'

My personal view is that it is because of ignorance and a general perception that somehow they are more risky??! and they are prescribed by GPs who say they are more expensive. I wonder if they take into consideration the cost of INR testing and all the extra appointments when there is difficulty stabilizing their INR?

Any ideas?

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CDreamer
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92 Replies
mswillow profile image
mswillow

My thoughts on this are warfarin has been tried and tested for many years and with little to no side effects, the newer drugs I don't think have a long enough track record yet as in tried and tested and I'm not sure that some have antidotes to reverse their effect as in warfarin, if levels go way high, vitamin k can be given to reduce it. But I guess the newer drugs need to prove them selves, the only way to do this is if they get prescribed, which seems to be a problem? Now all the above is just me having a we guess, I don't really know to much about it at all. :-)

CDreamer profile image
CDreamer

I think you are right, that is people's perception but I don't think it is the reality.

How long a track record would you want before you thought they were 'safe'? They have been extensively tested and NICE approved for several years. If it were a new drug used for a treatment rather than preventative I wonder if the uptake would be grater?

There is no antidote for any of the new anticoagulants but then because they have such a short half life it isn't that essential, hospitals do have procedures to be able to reverse the effects if they have to in an emergency.

I think the advantages far out way the disadvantages.

mumknowsbest profile image
mumknowsbestVolunteer in reply to CDreamer

They were not NI C E approved for af initially

CDreamer profile image
CDreamer in reply to mumknowsbest

And they are now.

BobD profile image
BobDVolunteer

Cost is a major factor where GP and CCGs are concerned and I know of several practises where they are not allowed for this reason. I agree that more use can allow more testing but personally I remember thalidomide and what that produced in the way or human trauma. The question of no antidote I use as an excuse but in reality the half life of the medicine is such that it is not really an issue and cell packing by transfusion could be used in emergency.

Regarding warfarin,, for those very few for whom attaining a balanced INR is a problem then the NOACs are a useful fall back but warfarin itself has been used for many years with very few problems and for those of us on stable INR there is little point in changing.

At the moment although approved by NICE these NOACs will always be a second line drug to be used where warfarin is either unsuitable through a bad reaction or when stable INR has proved impossible.

I think that is pretty fair for somebody who is biased against them. lol

Bob

CDreamer profile image
CDreamer in reply to BobD

Thanks Bob for your contribution and I think you have some valid points re for those happy on Wafarin and I am interested your bias, what I don't get is when people have a lot of problems with Warfarin and we have a lot of posts on this site about that, GPs won't even consider them as an alternative and I think that it may also be ignorance rather than or as well as cost. Surely it is not in their patients best interests to not even consider them?

BobD profile image
BobDVolunteer in reply to CDreamer

I agree completely and there is a huge problem with ignorance. It is only in the last five years or so that we seem to be getting the message over about AF to GP level at all! There are still far too many GPs who think you should just get on with life and not make a fuss about it. Pat on the head and a lump of sugar as my wife would say. Remember that were it not for AFA and Trudie and her team we would not be having this conversation anyway. When I started my AF journey in 2004 there was diddly squat out there and it was very scary with no support. We have come a long way in a relatively short time but still a long long way to go. We must all take responsibility for promoting the whole story of heart rhythm problems and work together . Don't forget Heart Rhythm Week, 2nd to 8th June and try to organise and event near you.

Bob

tony85 profile image
tony85 in reply to BobD

And of course they are so expensive that 99.99% of those with Af can not afford them. (very few countries are rich enough to give give away expensive AC drugs)  but many can afford to give away wafarin

BobD profile image
BobDVolunteer in reply to tony85

Sorry here in UK  the cost to individuals is not relevant as we have NHS and our laws are such that you have a choice.

Mrspat profile image
Mrspat

When I discussed the new anticoagulants with my cardiologist last week, she asked how I knew about them. This suggests to me that they aren't being offered as first choice, only if you ask. I'm pretty sure there's a hidden agenda - warfarin has worked for many people for many years and is cheaper, so don't mention it to patients without good reason. My good reason is that I tried warfarin and didn't get on with it.

CDreamer profile image
CDreamer

I absolutely agree with you Mrspat, had a similar experience in that it was only when I read up on them on the AFA and asked we had the discussion. Cardiologist only offered aspirin or Warfarin. My EP warned me that some GPs won't prescribe them and he made a point of writing to my GP advising them as a first option as he believes them to be more suitable for AF, luckily for me, my GP is totally on side and very supportive.

Rellim296 profile image
Rellim296

My first point would be that with the new anticoagulants, you know where you are - protected. The "security" of warfarin and the INR test is to my mind a fallacy, as you know the INR when you were tested, but it could be wandering all over the place between one test and the next. I had weekly tests from January to March this year and they paint an unhappy picture.

I understand that the newer anticoagulants also provide a better level of protection than warfarin.

I find it scary that they have no antidote, but my other half is good at first aid and is used to dealing with nasty injuries. I find warfarin quite scary too and I am frightened of my potato peeler.

Buffafly profile image
Buffafly in reply to Rellim296

I had the same experience - had a rather panicky call from my doc on Christmas Eve to say stop taking Warfarin at once because my level had gone up too much, imagine if I had not got the message for some reason?

cleo9 profile image
cleo9

I have had AF for a year now, and been on asprin and verapamil I recently had a DVT after a fall , and was offered the choice of warfarine or rivaroxaban, my cardiologist was going to put me on dabigatran , but said the rivaroxaban did the same job so to stay on that. Fortunately not had any problems with it .

Warfarin has been around for a long time and we know where we stand with it. I don't want to take new drugs, there's always an issue with anything new but it takes years or decades for it to come to the fore. And my EP said for me to stay on Warfarin because another procedure was due, which never happened as it turns out, that was his preference.

The testing is a nuisance but gives me confidence. I may have to buy my own machine, going to speak to the doc shortly.

Koll

Beancounter profile image
BeancounterVolunteer

Well I am going to contribute to this interesting discussion from my perspective as a "beancounter" if I may.

Someone said earlier in the thread, surely taking into account the cost of blood tests warfarin is not much cheaper.

I talked to my pharmacist about this, and warfarin is a lot cheaper even with blood tests, currently a month's supply of warfarin depending on dosage, is charged to the pharmacist at between 8p and 16 pence. Yes I did say pence.

A month's supply of almost any of the NOACs is between £58.50 and £90.00 depending on the brand, so the difference in cost price is huge and of course the difference to a doctors budget is similarly huge.

NICE have costed out anti-coagulation, it can be found here.

google.co.uk/url?sa=t&rct=j...

But it should be remembered that this study was specifically to compare the costs of anti-coagulating, versus not and treating strokes (fairly horrifying that we are reduced to costs in a NICE report but it comes down on our side)

This report in Appendix B, lists the costs of warfarin treament as £322.00 per year, and that includes drug costs, blood tests, anti-coag clinics, and even Software, Hospital Accreditation and Quality Control.

Compare that to the drug cost alone of a NOAC at not less than £58.50 a month just for ther drugs. There would still be clinic costs and accreditation etc.

Now I am NOT arguing against NOACs simply pointing out that the costs to the NHS are vastly higher than with warfarin etc.

I have few thoughts on that subject

1) The antidotes have been produced and are currently undergoing testing and awaiting accreditation in the USA, maybe 18 months time?

2) NOACs do seem to have medical advantages over warfarin, slightly less bleeds, and arguably more appropiate for AF.

3) New drugs get a 20 year patent before they are opened up to generic equivalents ( like Viagra in 2012) For the earliest of them it means 2028 before we see a substantial reduction in the prices.

Hope this contributes

Ian

CDreamer profile image
CDreamer in reply to Beancounter

Thanks Ian that is very informative, just one query I don't understand your point about costs over and above the cost of drugs for NOACs? What other costs might there be?

Beancounter profile image
BeancounterVolunteer in reply to CDreamer

Hi Cdreamer

Well no blood tests at least not as regular as with warfarin, however some blood tests are carried out with the NOACs but much less frequently, and there are still overhead costs of running an anti-coag clinic itself (still needed) and of course just like the report says, admin costs, accreditation, and staffing.

If you look at Appendix B they work out a weighted average for all these costs, they will roughly be c. £100 per patient per year.

Be well

Ian

CDreamer profile image
CDreamer in reply to Beancounter

I have been on Dabigatron for 6 months and never been asked to attend an anticoagulation clinic nor ever had any blood tests? Am I missing something here?

The only blood tests I have as a scheduled thing is the annual tests I have for my Healthy Heart screening which my GP runs and I had those long before I was anticoagulated? Accreditation for what?

Beancounter profile image
BeancounterVolunteer in reply to CDreamer

Hi CDreamer

Well congratulations on having a enlightened GP surgery, but you will need blood tests usually for kidney function at some point not sure how often probably annually. Maybe the NOACs will see the end of anti-coag clinics but I doubt it as they treat other conditions apart from AF.

By the way Pradaxa (dabigatron) in the US is currently quoted at $3,000 a year (drug cost only) which equates to around £1,794 at today's rate

LIke I said I am not arguing for or against, just pointing out the cost differences.

Be well

Ian

CDreamer profile image
CDreamer in reply to Beancounter

I do get the cost implications thanks Ian and I guess the kidney function is covered by my GPs annual screening, well I know it is! It is sad when cost is the ONLY factor and I am not arguing against Warfarin just for some flexibility for those who don't get on with Warfarin.

in reply to Beancounter

Hi ian,

I was prescribed and have been on Pradaxa (Dabigatran) for nearly 2yrs now and I do not attend an Anti-coagulant clinic or have never had my blood tested as there just isn't way of monitoring this drug. So the only cost on this one is for the drug itself, which is probably quite high? My Cardio didn't hesitate to change me from Warfarin after 2 very nasty haemorrhaging episodes so perhaps it's all down to geographical funding?

reedman profile image
reedman in reply to Beancounter

Very interesting Ian but I read on some NHS site that NICE had approved the new drugs as "cost effective" to the NHS which doesn't quite square with what you have written? I think that NICE were taking into account the prvention of stroke which, of course, costs the NHS a huge amount. I also read that the new drugs are significantly better than Warfarin at stroke protection.

Beancounter profile image
BeancounterVolunteer in reply to reedman

Hi Reedman

I completely agree, NICE have published a document (which I linked to above) saying that anti-coagulation is completely "cost effective" as a stroke preventer, in that the costs of stroke are very expensive to the NHS.

However this is not quite the same as saying that the cost of the NOACs is the same as warfarin, because they are more expensive, roughly 3- 5 times as much even taking into account blood tests.

Plus of course the challenge is that local budgets don't take account of "cost effective for the whole NHS", they simply see that they are spending more on their own budget and then react by limiting the prescriptions for NOACs. It's the challenge of not being able to link these things up properly, which NICE are addressing but they are not there yet.

Be well

Ian

rosyG profile image
rosyG

One word of warning- because the new anti-coags have a short life it is more serious if one forgets to take them- At the AF conference in November, a neurologist described a stroke he caught just in time- it turned out the patient had forgotton one of two doses of diagatran.Obviously one mustn't forget warfarin either but one could adjust the dose for the next few days to compensate??

CDreamer profile image
CDreamer in reply to rosyG

That is a point and likewise it is incredibly important to never take a second dose within a period of time, usually if you miss your dose for more than a couple of hours you shouldn't take one and then another within 6 hours, so it is safer to miss a dose rather than compensate. You NEVER adjust the dose, only the timing so if I am late in taking a dose I might gradually get back to my normal timing which is 9am & 9 pm by taking my next dose slightly later. You do need to be fairly rigid about this because of the half life of the drug, the dose which is designed to be effective for just 12 hours. overdosing within that 12 hour window will make you susceptible to internal bleeds.

Rellim296 profile image
Rellim296 in reply to CDreamer

If you are also taking flecainide, you probably already have a fairly consistent drug regime.

Maitha profile image
Maitha

I'm not aware of other anticoagulant rather than warfarin since all are not suitable for people with artificial valve like mine.

My main concern usually is the side effects , since drugs usually help treating something and destroying other thing , from this point of view which is better and more save to use warfarin or the new anticoagulant drugs?

If I offered to replace warfarin with a new anticoagulant I will think twice about trying the new one which hadn't been tried enough in the market for long term side effects , where I'm fully aware about warfarin and knew already my body response to it

Thanks CD for your valuable post.

Maitha

regalone profile image
regalone

I was on Xarelto for 5 months. It stopped my bone marrow from producing red blood cells and my red blood cell count was done to 5.6 before anyone figured out what was wrong with me.( normal is over 12). I had to have 3 pints of blood transfused. In a less healthy person, it could have killed them.. So, I wouldn't rush into these new drugs without some good research...also, it was for me very expensive (over $250 US for a 30 day supply).

Most M.D.s wait several years after a new drug is introduced into the market before they themselves take it....and this is probably a good example of why.

Tomorrow I have my cardiac ablation.....and once I have that, my E-P is going to put me on warfarin,and they'll get no argument from me in that regard.

Rellim296 profile image
Rellim296 in reply to regalone

Hope it goes well for you, regalone.

jeanjeannie50 profile image
jeanjeannie50 in reply to regalone

Best wishes for tomorrow and I hope you come out of hospital with your AF cured.

regalone profile image
regalone in reply to jeanjeannie50

Well, I had the ablation at a top notch facility here in Los Angeles and as of 36 hours my heart has been in AFib for about the last 24 hrs (which was not typical of my AFib....few minutes or hour at most in the past). My heart rate goes from 74 to 114 in a minute, jumping all around. Saw that on the monitor until they unhooked me before I left the hospital at noon. For the first 12 hours after the procedure (which I remember none of T.G.) my heart was in NSR, but then it went into AFib and has stayed there. To say the least I am discouraged. I know that sometimes a person can have this happen right after the procedure and then the heart heals and it goes into regular rhythm, so I am going to hope that is the outcome in my case. Don't really want to go through another one of the Ablations, even though it wasn't the trauma I was worried it would be.

Rellim296 profile image
Rellim296 in reply to regalone

Oh, regalone, what bad luck. Do keep us up to date. My heart rate increased after the ablation too and is now slower but not like it used to be. I had one short burst of AF two weeks on which dismayed me, but have not had another. Hope yours will sort itself soon.

Glad the procedure wasn't traumatic.

regalone profile image
regalone in reply to Rellim296

Thanks, I am hopeful that this is just my heart reacting to the stress of the ablation and it will go into normal rhythm soon. Tonight I feel better and I am no longer in AFib, so keeping my fingers crossed. Even though the procedure was tolerable and the facility was first rate, I really don't want to have to do it again. Will keep you posted,and thanks for your good wishes.

jeanjeannie50 profile image
jeanjeannie50 in reply to regalone

It's too early yet to say the ablation hasn't worked. Don't forget it's the scar tissue that forms to block the rogue pathways that is the cure. That scar tissue will take a few months to form. Best wishes and take it easy for a few weeks.

regalone profile image
regalone in reply to jeanjeannie50

Thanks for the encouraging words, I am not going to assume it hasn't worked, I know it does take some time in some people for the scar tissue to form and the benefit to be seen. I am seeing the E-P in two weeks, and I know I'd have to wear another heart monitor before any further decisions were made. Just holding positive thoughts right now.

rosyG profile image
rosyG in reply to regalone

good luck Regalone- hope all goes well-let us know it you get on please

CDreamer profile image
CDreamer in reply to regalone

Sorry to hear of your difficulties and hope ablation goes well for you.

JMM7 profile image
JMM7 in reply to regalone

regalone, what were your symptoms? I'm on Xarelto. I feel fine...just wondering if I should be concerned...

regalone profile image
regalone in reply to JMM7

I was extremely fatigued to the point I could hardly get out of bed. It got worse and worse. My foot swelled one day and once my leg swelled, I thought each was some separate incident, but the fatigue was the real key to knowing something major was wrong. I'd seen 2 doctors for the other issues before it dawned on the cardiologist I was seeing (not the E-P who prescribed the Xarelto) to order the blood test that identified the extremely low red blood cell count. Once that was identified, it was easily treated (I needed 3 pints of blood) and my bone marrow started working again. I didn't bleed from anywhere, which is one of the known side effects of Xarelto, rather it suppressed my bone marrow production, a much rarer (but known within the industry I've found out) side effect, primarily (so far) in women.

JMM7 profile image
JMM7 in reply to regalone

Thanks for your reply- hope you are doing better!

G'day CDreamer and other interested parties,

I'm on Warfarin for life, happy place to be, no worries and no dramas and am on 70 day INR tests - apart from a variety of red wines its my very bestest friend. HOWEVER - I stay vigilant and should I detect any problems as I age then its back to the drawing board.

BUT - I would like to refer you all to the Australian Government Department of Health website and in particular the Theraputic Goods Administration section link is - tga.gov.au/safety/alerts-me...

This is all about Australian Government safety alerts and advisorys on Pradaxa, no need for me to comment - basically scroll through and form your own opinions !

BobD - if you are out there - maybe apart from NICE, and I'm not really sure here - are you aware of similar safety alerts and advisorys produced at all by the UK Government and/or its agencies.

By the way if you get an error message when you get into the website just type PRADAXA into the search box (top right) which should take you into alerts - you are then looking for TGA item 3 an alert/update of 23 May 2013, a bit dated now but that seems to be the latest alert.

Cheers

Aussie John

Juls54 profile image
Juls54

After a TIA in Jan my EP put me on Xarelto ( Rivaroxaban) & I have had no problems at all , 1 tablet a day & no diet restrictions . Xarelto does have a short half life I think it is 48 hrs & I wear a silicon Medi Alert band with drug name & dosage on it for safety .

Loquitir profile image
Loquitir

Some people have significant warfarin allergies. This can be due to the genetics of how the warfarin is processed in the body.

Further, the medical evidence is showing that the new anti-coagulation medicines have increased efficacy in preventing clot related strokes.

Lastly, the cost of INR testing is rarely considered when prescribing warfarin.

I moved from phenindione to rivaroxiban. I don't have to have my INR measured every week and have no side effects either.

Beancounter profile image
BeancounterVolunteer in reply to Loquitir

Hi Loquitir

Fully agree with everything you say, except that the costings do include the costs of testing, and warfarin is still approximately 1/5th the cost of the NOACs to the NHS See my posts above.

But I fully agree with you that costs should not be the deciding factor.

Ian

Loquitir profile image
Loquitir in reply to Beancounter

Hi Ian

I looked into this at the time that there was a phenindione supply shortage. This is the INR measured equivalent of warfarin for those with warfarin allergies.

I was told that the cost 70mg phenindione which was required to be 7x10mg tablets per night amounted to a cost to the NHS of about £630 per month. In addition the PCT told me that the cost of each weekly INR test ranged from £20 to £50 depending on where it was done and whether the blood was taken from a finger or your arm and the results were seen by a consultant or posted back to you in a book.

I am not sure of the monthly cost for warfarin to the NHS. I would have thought that al in all there can't not too much in it cost wise between warfarin and the new anticoagulants. You also have to consider the cost of managing warfarin contracts nationally because that's how's it done.

I know the cost of Rivaroxaban 20mg is about £35 per month with no monitoring overhead. So in my case the switch was a no brainer.

In fact, I had my own INR checking machine at home so I merely rang the hospital when it was out f range. The cost of my time going back and forth to hospital most week was hugely expensive.

Thanks for the useful comment.

Hi All,

I have just come out of hospital having had a further TIA and I was at the Coagulant Clinic as it was happening and my INR was 2.7 at the time. They have now changed me onto Pradaxa, so here's hoping its better. Having read in one of the messages's above will start taking them 12hrs apart, thanks for that top tip it makes sense. I do have an upset tummy at the moment not sure if this is a side effect or not yet. But I do feel more elert. As always time will tell. Interesting I was only at GP a week earlier having been sent there on recommendation of the coagulant nurse to see if he would consider me for the new drug. He said no and it was the hospital consultant who offered it. When I was leaving hospital though, he did ask me again if I was sure I wanted to come off Warfarin.

CDreamer profile image
CDreamer in reply to

Hi Poppyseed, so sorry to hear of your TIA. I did have indigestion and heartburn when I took Pradaxa without food, as soon as I took it after food it went away, you must also drink at least a half glass of water when you take them as they need an acidic environment in order to work.

in reply to CDreamer

Good to kow, thanks. My bottom lip went numb last night, do you ever get this?

CDreamer profile image
CDreamer in reply to

No I haven't.

rjr681 profile image
rjr681

I was given Pradaxa (dabigatron) 6 weeks prior to a cardioversion March 2013. The cardioversion failed. I remain on il and had another cardioversion March this year. that failed and I am still on it. One year and no problems that I know of. I have had no checks to the best of my knowledge specifically to check if it's working, just assume it is working. I think the reason I was offered it was that I was quiet active until this AF thing started and I still try to be, though some days it's a bit harder than others

Ray

I know what Ian says is right, cost shouldn't be the deciding factor but it often is. Our GP has a weekly clinic set up, nurse takes a finger-prick blood sample and tests on the spot, for them it must be far cheaper than prescribing a NOAC, I guess the costs go up with hospital visits and long trips. I can see why they stick to warfarin - indeed you really have to have a bad reaction to it to get a NOAC in Wales, so I believe.

Lis

CDreamer profile image
CDreamer in reply to

I wonder why Wales is so difficult to get ablations & NOAC prescriptions? I guess we are back to postcode lottery again

in reply to CDreamer

It is - Wales is completely different to England. I wasn't at all happy about Cameron's jibe about life and death either side of Offa's dyke, I can tell you...

CDreamer profile image
CDreamer in reply to

I am not surprise you weren't happy! Yet England & Wales are supposed to be under the same governance whereas Scotland and N Ireland are different. Strange.

My physician daughter says that Warfarin is safer because there is no antidote for the newer prescription drug thinners should anything go wrong. I don't know if this is still true.

CDreamer profile image
CDreamer in reply to

There is an antidote in trials in the US and there is a procedure that can be done in hospital in case of emergency but as the half life is only 12 hours it is not considered a huge difficulty. I think the main difficulty is outside of major trauma centres the medical staff may not be aware of the protocols.

When being told I needed meds for AF and preventertive (family history strokes) I had read about apixaban on BHF website so when the consultant were going to put me on Warfarin I asked about apixaban and he were happy to let me try it , so it's been a year and so far Iv'e been fine I only need a blood test once a year which is better I know it means a tablet twice a day but it's not a problem.

CDreamer profile image
CDreamer

Thanks everyone for your contributions and very interesting views, experiences and posts.

youngchucks profile image
youngchucks

Re beancounters reply u say that costs of 322 a year for warfarin against 60 or so a month for new drugs but this would only be if u were one of the very luky ones who can get inr etc right if not akl the extra visit to clinc etc would increase this considbly and what about the cost to the patient car parking time stress or dont we count of course not or drugs would not come down to money would they so I am obviously one of the lucky ones my gp did not think this way

Beancounter profile image
BeancounterVolunteer in reply to youngchucks

Hi Youngchucks

Of course you are correct, the £322 a year quoted by NICE is taken from an overall survery and uses the statistics of probably more than 1000 patients, and some of course will be on weekly testing (I was for nearly 12 weeks for example) and some as long as 10 or 12 weeks, it's only an average, and like all statistics there will be anomalies.

But I think your second point is a really good one, they do not cost patient time, parking travelling etc etc, and that's a plus for the NOACs, not taken into account.

And believe me I fully agree that these things should not come down to money, but we live in the real world, and there are real budgets, and real decisions to be taken by local teams on what they can afford or not afford. It's all very well for NICE to say this is overall cost effective to the NHS, but until they increase local budgets then it won't come through to all of us.

Also the local budgets have their difficult decisions, I think we need to appreciate that, they may have to be deciding between say a cancer drug for children and NOACs, and it's not a decision that I would like to have to make, but finances are finite.

Difficult area

Ian

CDreamer profile image
CDreamer

Re costs: thanks for your point young chucks re cost to the patient. I and my husband are self employed and my husband's main business is conducted in the USA so he has, at times, been out of the UK for approximately 30% of the time. For people like this and I am guessing he is not the only one,

regular testing would be virtually impossible.

I also think that in the uk we are incredibly lucky to make a very small or no contribution toward the cost of our drugs but would point out that if the costs of Wafarin are so low then Wafarin users are in effect subsidising those of us on NOAC's.

Many of us, I speak for myself only here as I know many would be unable to and for those I would want them to continue to have what they need, could afford to make a contribution toward our drugs and might prefer to do that, rather than not have a choice. In Spain pensioners pay 10% of the drug costs for instance. The NHS was/is a wonderful institution but I do think needs a radical rethink regarding costs/charges etc. The present postcode lottery of who is offers what is really not acceptable.

Buffafly profile image
Buffafly

Seems from the above comments that I have been lucky (as long as all goes well!) after reading previous posts re anticoagulants I made an apt to see my doc but before I got there I was admitted to hospital with fast AF and angina. I dreaded being on Warfarin again because my INR would never stabilise previously and I had nasty side effects but I was ready to accept it, however the consultant told me I should have one of the newer drugs and put me on Xarelto. I would have had to buy my own testing kit otherwise because I would have great difficulty getting to a clinic weekly.

CDreamer profile image
CDreamer in reply to Buffafly

You are correct Buffafly, your anticoagulants will come out of your GPs budget as he will be the one prescribing the ongoing scripts. You are not the first to say your GP won't entertain it and hospital doctors are happy to recommend them, tricky isn't it?

Mrspat profile image
Mrspat in reply to CDreamer

My cardiologist says that hospital has to fund for first three months, then it has to be funded locally/individually. She's already prepared the ground by telling the GP I don't want to take warfarin. I'll find out this afternoon what the GP has to say.

CDreamer profile image
CDreamer in reply to Mrspat

How interesting. Thank you.

I wonder why the hospital Doctors are doing this, as this just happened to me too. I was admitted and sent to ward, on my first intro to ward consultant he just said 'how would you like to try one of the new drugs' oddly though he questioned me on leaving if I really want to change. Which makes me think is there now a cost to the GP ? As he would not entertain me changing the week before. If so, this may make GP think twice who they want on there books? It all makes me feel reminiscent of how the dentist's began to change.

Rellim296 profile image
Rellim296 in reply to

All of this is veering me towards thinking again about taking no anticoagulant at all - no costs, no side effects, no appointments, no dietary implications, no hassle, cut yourself and it's not much of a problem. No protection from stroke, of course, but no worries about cuts, bruises, internal haemorrhages...

CDreamer profile image
CDreamer in reply to Rellim296

Dangerous gamble though Rellim

Mrspat profile image
Mrspat

It was thinking the same thing Rellim296. Using the Stroke Risk Assessment tool, my personal risk is apparently 9 times higher than average, which sounds terrible. However, the annual risk to me is only 2.2%. My maths is not very good and, as they say, there are lies, damn lies and statistics. So, my stroke risk as opposed to someone who is healthy and without AF looks high on one basis but there's still a 97.8% chance that I won't have a stroke. I'll be revisiting this with the doctors in future.

Rellim296 profile image
Rellim296 in reply to Mrspat

There's a less than 1% chance of having my blood group!

CDreamer profile image
CDreamer in reply to Rellim296

Got it!

Beancounter profile image
BeancounterVolunteer in reply to Mrspat

Hi Mrspat

Now I am a number man, and I'm going to admit that I don't fully understand this, but at one of the conferences, several doctors, not just one said, that we need to understand that the risk of stroke is cumulative, not linear. What that means is that for every year you don't have a stroke, the risk is higher in the following years. So actually your 97.8% may not be accurate. depending on how long you have had AF.

As I said I still don't fully understand this, and I certainly can't put any numbers on it yet (I promise to go away and research however) but by way of example, here is a paper talking about the difficult of explaining cumulative risk to "older" people (what poor wording)

pmj.bmj.com/content/80/949/...

Perhaps this is one we should nail, as some of the the figures in here are quite scary, for example

"The difference between placebo and warfarin in preventing strokes in atrial fibrillation demonstrates this well: a stroke risk of 4% v 12% after one year, but a risk of 34% v 72% at 10 years."

Can I repeat that I am not sure what these numbers represent, but the risk is certainly cumulative and not linear, so a 2% stroke risk in year one, will almost certainly be 4% in year two etc, but as I said I will come back when I have researched further.

Ian

Rellim296 profile image
Rellim296 in reply to Beancounter

This is exactly as it was explained to me by our practice's anticoagulation expert - year by year the risk increases.

But won't I be spitting tintacks (if I surface in time) if I'm on any anticoagulant and have an accident like my friend who fell down the stairs a few weeks ago and woke to find her hair stuck to the carpet by congealed blood?

I don't know which way to turn as all the possibilities have their own risks.

CDreamer profile image
CDreamer

Ouch....Such a dangerous gamble because although the above may be I convenient, they aren't life threatening or life changing, strokes are. The debate was never about should we take them at all, I took that as a given, just which ones to take and about have we a choice?

CDreamer profile image
CDreamer in reply to CDreamer

Spell checker agin not Freudian slip, should read INconvenient!

Rellim296 profile image
Rellim296 in reply to CDreamer

Yes, I do acknowledge that no anticoagulation is walking on thin ice.

dedeottie profile image
dedeottie

I can see why it's tempting.g to opt for no anticoagulation but consider this. I was 53 I was otherwise in great health. My wieght was correct, blood pressure was a little low if anything,I had an otherwise healthy and structurally normal heart. I was very fit riding 2 competition horses, looking after 4 and also had a full time teaching job. When in A.F. My heart rate never went above 130. Of course with a score of 0 I was neither on aspirin or warfarin. Guess what ? Yep I had 3 T.I As in which I lost my speech temporarily. Because of this my score is 3 and believe me, I can't get the warfarin down my throat quick enough.x

Rellim296 profile image
Rellim296 in reply to dedeottie

You've been very unfortunate, but at least you can make your mind up and feel the steps you have taken are the right ones.

dedeottie profile image
dedeottie in reply to Rellim296

That is actually very true. At least it made decision making easy.x

morrisdancer profile image
morrisdancer in reply to dedeottie

Hi dedeottie, I was really interested in getting in touch as I was a teacher, have a competition horse and am on Flecainide, so thought you might be able to answer my questions. I was diagnosed about three years ago when I was having episodes of Afib almost daily and was put on Flecainide 50 twice daily,and aspirin. This was increased to 100 twice a day. I eventually was given an appointment with an EP who has put me on the waiting list for an ablation. He says I must go on one of the new anticoagulants a month before the ablation and at that point suggests it would be extremely unwise for me to be riding my highly strung Arab in endurance competitions. I can see the danger myself of course. I wondered if you still rode now you are on warfarin? Do you think I would still have to take it after the ablation? Am interested to know how you have coped with it all.

dedeottie profile image
dedeottie in reply to morrisdancer

Hi and what a set of coincidences. First of all let me say that I am on warfarin so there is a chance that one of the new anticoagulant may behave differently but I wasn't given that option. I had already had some T.I.A.s and was terrified of a full blown stroke so there was never any doubt that I had to be on an anticoagulant. I too am on the ablation list and my E.P. has said I will still be a stroke risk and will need to stay on warfarin for life. However I have read different from other people on this site so it is worth asking your E.P. about your individual case.

As for coping how long have you got?! My husband also rode and we had taken early retirement so that we could have a few years concentrating on the horses instead of fitting them in round a full time job. A lesson in how the best laid plans and all that. Anyway for a while I continued to look after the horses. I gave my home bred dressage youngster to a talented rider and thought I might enjoy being an owner. As I suspected this just didn't do it for me and nor did the thought of riding a "safe" cob round the lanes. Someone suggested I did some riding teaching but that was too close to the day job!!' In the end we decided to take the bull buy the horns and change our lives completely. We sold the house and land. Gave away and sold the horses and moved to coast in South Wales closer to our son . Over the last few years we have enjoyed sorting out a new house and garden making new friends and interests and discovering new places. We now have a grandson and are glad we moved closer. We would never have made the move with all the horses in tow. I clan honestly say that life is good. We have enjoyed rediscovering hobbies that we had no time for when we had horses. I won't pretend it has been plain sailing because horses where such a big part of our lives but giving up wasn't as bad as I thought. I know this probably won't help as the last thing you want is to think of stopping riding but it may not come to this so you must talk to your E.P.

It is so good to have found a kindred spirit so please keep in touch. X

Mrspat profile image
Mrspat

Just back from the GP who is willing to prescribe the NAOCs. However, I am also getting a new medication for my AF, starting tomorrow, and she wants to introduce one at a time. So I'm still on Aspirin for the next week or so. Like me she considers I'm low risk but is bowing to insistence of cardiologist that I have proper anticoagulation. I told her I reserve the right to come back and argue the toss at some point and she laughed!

Dottilind profile image
Dottilind

I spoke to my doctor the other day about the other anticoagulants, and she informed me that because there are no antidotes for them where as warfarin can be reversed. When she weighed up the pros and cons I am happy to stay on warfarin but I am still a little scared of it.

Beancounter profile image
BeancounterVolunteer in reply to Dottilind

Hi Dottilind

Can I just state there is nothing whatsoever to be scared of with warfarin, the great majority of the people on this board will be taking it like me, with no side effects, almost no dietary change, and only the very slight hassle of blood tests, apart from that it's praobably the easiest drug I have ever taken.

So please do not be scared of warfarin or the new anti-coagulants, if you want to be scared, be scared of having a stroke without them, now that's scary.

Be well

Ian

Dottilind profile image
Dottilind in reply to Beancounter

Hi Ian thanks for that info. When I started on AF site I had a count of 7.6 and had a very bad bleed in my arm which caused pains in chest and then was taken into hospital. The chest pains are the ones I am afraid of now but they did not tell me what these were they just put it all down to AF. But thanks again.

tony85 profile image
tony85

because the new anti-coagulants are so expensive that only a miniscule number of people with AF  can afford them or they are lucky enough to have government healthcare to pay for them.

CDreamer profile image
CDreamer in reply to tony85

The principle of healthcare in the UK is that ALL people receive free healthcare at the point of delivery - there is no discrimination between race, creed, religion or wealth.  If you are over 18 and under 60 you pay a small, standard prescription charge for your medicines to the pharmacist who reclaims the difference from the state.  Luck does not come into it!

If you travelled to the UK and were taken seriously ill, you also would be treated - end of.

Private healthcare does exist in the Uk and many people use it, including myself, but even then prescriptions and medicines would be available on the NHS so your comments do not apply to the majority on this forum,

tony85 profile image
tony85 in reply to CDreamer

you are lucky to live in the UK.  I don't, and there is no way I can possibly afford the new anti coagulant drugs

CDreamer profile image
CDreamer in reply to tony85

We cannot choose where we are born, but yes, I am very grateful I don't have to fund my meds.  NHS is not perfect by any means and it now lacks resources to maintain standards but it has meant that everyone is treated equally and for that alone we give thanks.  

This forum started as UK forum but with members joining all the  time there are people from all over the world - UK, US, Australia & Canada mostly.  Where are you?

tony85 profile image
tony85 in reply to CDreamer

I retired to Thailand and apart from medicine it is much cheaper than the UK. But I live here because of the climate. Being  asthmatic I need a warm climate. I live on a beach and have very mild AF, but when I go to a big city (Bangkok) it seems to get worse. I think it is the pollution.

Warfarin is not such a problem really because there are plenty of small labs that do my INR without a doctors prescription in just a few minutes for about GBP 7 and I get the results emailed me in 4 hours.

CDreamer profile image
CDreamer in reply to tony85

So interesting to hear about other systems.  

Good luck to you and may your AF remain mild and infrequent.

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