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Change to Edoxaban

BrotherThomas profile image
63 Replies

When I was first diagnosed with AF about 3-4 years ago, I started on warfarin as my anticoagulant. However, this caused some very unpleasant side effects that I'd rather not go into. Over the next two years, I tried in vain to get help and saw four GP's, talked to 3 cardiologist registrars and the anticoagulant nurse specialists. Initially none was prepared to help so I suffered these side effects for two years. Eventually, I took matters into my own hands, lost some weight and persuaded a consultant cardiologist to switch me to Apixaban. Within a week the side effects I was suffering vanished, and I've had no more trouble from them.

Yesterday, I had a phone call out of the blue from a person claiming to be a pharmacist working from my GP's surgery saying that they'd carried out a review of all patients on anticoagulants and would like them to change to Edoxaban to "bring then into line with current prescribing guidelines". No other explanation was offered and no benefits/risks to me were offered either. I suggested that the motivation was a cheaper drug, but this was denied, and we agreed to disagree on this point.

On the grounds that the last time any of my meds were changed, not including the anticoagulant, I finished up in A&E twice and I'd only side effect free for about 10 months, I refused to agree to the change. The person was obviously somewhat irritated by my decision and said he'd send me a data sheet explaining everything about the change. I said OK but what turned up was simply the sheet that you'd get in a packet of the drug. Nothing about the reason for change, possible benefits or risks.

I just wondered if anyone else had had a similar conversation or knew of the reason why such a change was offered.

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BrotherThomas
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63 Replies
meadfoot profile image
meadfoot

Oh yes I have had exactly the same. Had a GP call out of the blue to change to edoxaban. They were honest and said its purely because it is cheaper, they didnt try to hide it. I refused until I had my next cardiologist app. At my cardio app he to me their hospital was being switched to it for cost reasons. He said it was a decent alternative no worries but as I suffer adverse side effects from many drugs why change something thats working well he said. He wrote this in his letter to GP which he always copies me into.

Lo and behold the next day the surgery pharmacist rang and said they had a letter and my cardio was fine for me to swop so I would be changed over immediately. No he didn't I said and quoted his letter, oh she said you have a copy of his letter do you. Of course I said and read it out to her and said so you see he endorses me not messing about with something thats working perfectly well. She changed her tune and said oh right we will leave you as is.

How cost effective can it be to swop people over and potentialy make them ill requiring further medical intervention at greater cost. Stand your ground.

baba profile image
baba in reply to meadfoot

I hope you have made an official complaint about that pharmacist.

BrotherThomas profile image
BrotherThomas in reply to meadfoot

Thanks for that, at least yours was honest with you. As it stands, mine has agreed to leave things as theyb are but time will tell. I endorse baba comments to about reporting the pharmacist for such a bare-faced lie.

shanelomax profile image
shanelomax in reply to meadfoot

I had the same call saying it was to do with cost but I have been taking Edoxaban and I am suffering from bloating and feeling very uncomfortable has anyone else had these side effects?

meadfoot profile image
meadfoot in reply to shanelomax

I have heard about gastric issues with Edoxaban that some people suffer from. Given that I have dreadful gastric issues generally then adding another dimension with a different drug is a no no for me,

Auriculaire profile image
Auriculaire in reply to shanelomax

I get that from Apixaban. All these "bans" work in the same way at the same point on the clotting mechanism so it is likely that if one does get side effects from them they will be similar. Most people are fine with them. Rivaroxaban seems to get the most complaints.

Qualipop profile image
Qualipop in reply to meadfoot

OMG, you need to report that pharmacist for the bare faced lie. Luckily they aren't all that bad. I recently had one phone me to tell me to NOT take something one of the GPs had prescribed as it could interact fatally with my painkiller. A consultant had mentioned it as a possible treatment but the GP who I'd never met simply went ahead without reading my notes properly.

meadfoot profile image
meadfoot in reply to Qualipop

Scary isnt it. We certainly have to be on the top of our game. Pleased you were stopped from taking the med in time. Phew.

Qualipop profile image
Qualipop in reply to meadfoot

YOu have to be really alert and proactive these days.

BrotherThomas profile image
BrotherThomas in reply to Qualipop

Unfortunately, there was no independent witness to what he said so it's my word against his and no guesses who they'll believe.

Qualipop profile image
Qualipop in reply to BrotherThomas

I'd still do it.

Hylda2 profile image
Hylda2

Had annual medicine review today with pharmacist at surgery. There is a change to Edoxoban nationwide. Oh no, not because it’s cheaper but because it’s safer. Right. Then she spent ages working out some score or other with regards to bleeding. Mine was one out of 5!!

She gave up when she saw I came under cardiology. I have agreed to talk to EP about it when I see him in three months but will insist I stay on Dabigatran.

Timetraveler67 profile image
Timetraveler67 in reply to Hylda2

is the drug your on give any side effects please can you tell me thanks

Hylda2 profile image
Hylda2 in reply to Timetraveler67

absolutely fine on Dabigatran. Really don’t want to change

Teddi63 profile image
Teddi63

yes have just received letter saying changing my Apixaban to edoxaban Im not happy as I get ill when change pills It says as the NHS budget is finite and NHS must spend money in most appropriate way to enable more services and more and treatments to be supported and appropriately reducing the drugs budget is one way of enabling this to happen and have left a number to phone I didn’t want to take blood thinners so had a stroke as I have a/f so for years taken apixaban and has worked so I definitely will not change to edoxaban as I always get ill when I change pills Perhaps I could pay the extra money it costs the extra than edoxaban as I’m 83 years Ill find out more tomorrow It’s everything’s happening as have another letter changing my eye injections to a cheaper one it’s so worrying at the moment but I think I’d rather not take the new edoxaban so I won’t do that so will do without either !!! and hope for the best I m sure no one will want to change over as when apixaban works it’s madness to be told they’re changing it

meadfoot profile image
meadfoot in reply to Teddi63

Well Teddi stand your ground. My argument will continue to be so you want me to change to save money but if I am made ill by it then it will cost you a whole lot more for my care than if you left it alone. Please dont stop anticoagulation fight your corner and stay and well.

Hilly22 profile image
Hilly22

I’ve been on Apixaban for nearly 5 years but recently, following a blood test, had a text from my GP explaining that I was a suitable candidate for a change to Edoxaban. They said it was to save money and attached a link explaining that the two were comparable in efficacy and bleeding risks. I was asked to make an appointment with the surgery pharmacist to discuss but was told that I was under no obligation to change.

So I discussed it with the pharmacist on the phone as instructed and he couldn’t have been more pleasant and understanding. When I mentioned my reluctance to change and my reasons he said that saving the NHS money wasn’t my personal responsibility, and that if I was his grandmother (would’ve preferred him to say mother lol 😂) he’d leave me on Apixaban as it’s working well for me, so why change!

And that’s the way it should be. I’m shocked to hear that you were being pressurised into this change and weren’t given an honest explanation. 

BrotherThomas profile image
BrotherThomas in reply to Hilly22

Thanks for that, at least they have agreed to leave your meds unchanged for now.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to BrotherThomas

Hi

I read Apixiban is the safest.

BUT

New Zealand doesn't have it here. Cost???

I take the lower 110mg x twice a day of PRADAXA.

cheri JOY. 73. (NZ)

ozziebob profile image
ozziebob

Thomas, A month ago Suze43 posted this article about the current switch to Edoxaban.

You should read it to understand what is going on and be better prepared for your upcoming "discussions" with medical staff ...

pharmaceutical-journal.com/...

Incidentally, because of my previous chronic bilateral subdural haematomas, I was recently recommended Apixaban at a large London Haematology Clinic because it has a lower associated risk of brain bleeds.

However for those without medical exceptions, the standard recommendation now is Edoxaban, and you will have read the reasons for this current practice in the above article.

Good luck Brother.

BrotherThomas profile image
BrotherThomas in reply to ozziebob

Thank you for that reference, it makes interesting reading. Sadly, it really looks like GP's are going for the change to line their own pockets rather than for patient care. What a wonderful institution the Nothing Happens Soon has become. I've printed off a copy of the article and I'll keep it to hand in case they phone again or make the change despite my objections.

ozziebob profile image
ozziebob in reply to BrotherThomas

Good luck. You must win this "fight".

Here's the original Suze43 Post that presented the above article. The Replies might be of further help to you.

healthunlocked.com/afassoci...

BrotherThomas profile image
BrotherThomas in reply to ozziebob

Thanks ozziebob the comments were useful, and I'll keep them to hand just in case.

mhoam profile image
mhoam in reply to BrotherThomas

BrotherThomas,

Are you aware that GPs are not under the direct control of the NHS? They are basically small business, managed and run by their partners. They sign an NHS contract to provide GP services and get paid for their work.

The only way the NHS can influence or change their prescribing behaviour for approved drugs is via these sort of incentives. To suggest they are simply "lining their pockets" is rather unfortunate phrasing.

I agree any changes to a patient's medication should only be taken in consultation with, and agreement of, the patient. As you can see from the linked journal article, different Clinical Commissioning Groups (CCGs) who hold the budgets have taken different views on this topic. However to suggest the GPs are acting in bad faith is just not true.

I think we should all support the NHS acting to use the most cost-effective treatments.

Hope you stay well

BrotherThomas profile image
BrotherThomas in reply to mhoam

That's all fine but, it doesn't excuse the lack of help when I was suffering from the warfarin side effects. I guess we're not all fans of the NHS and GP's.

Qualipop profile image
Qualipop in reply to ozziebob

I just read the whole of that and I am absolutely disgusted that GPs are being paid by big Pharma to plug their drugs, especially this which has no antidote. Now I see why mine wanted to stop my opiate painkiller cold turkey after 20 years

BrotherThomas profile image
BrotherThomas in reply to Qualipop

Welcome to the modern HHS.

Dovewings profile image
Dovewings

just do your own 🧐research

You’ll discover it’s MUCH SAFER to JUST SAY NO to ALL these chemicals your body was NOT CREATED to CONSUME.

Speed profile image
Speed in reply to Dovewings

I strongly suspect that if we abandon all none natural medications we will see a significant reduction in both the length and quality of life of a large proportion of the population. Not a route I’d favour just on the basis of ideology.

Not always perfect, but generally, I follow the science.

pusillanimous profile image
pusillanimous

Oh dear, now I'm concerned. I do not live in the UK but take Xarelto, or now the generic which is cheaper but seems to be exactly the same as the original, made by the same company (Bayer) but with a different name on the box. No body has mentioned it. Is there a reason this should now be avoided and should I ask for a different drug?

Norfolk_spaniel profile image
Norfolk_spaniel

As somebody who suffers with intolerance to many drugs and can't tolerate any of the usual drugs given for AF, I have found that Edoxaban is one of the few drugs that I can tolerate.

fairyfeathers profile image
fairyfeathers in reply to Norfolk_spaniel

I too have great difficulty taking meds as I suffer with IBS. I was initially put on Apixaban as an anticoagulant which gave me bad gastric issues. I too, can tolerate Edoxaban which is a relief . So in my case it was my choice to change to Edoxaban and I was not pressurised to change by my GP.

oscarfox49 profile image
oscarfox49

Price cutting. Eliquis or Apixaban is still very costly as it is a relatively new drug and there are no 'generics'. I don't know much about Edoxaban but it is a similar drug working in a similar way. I must admit that if someone tried to take me off Apixaban just to save money, while I regard it as my life saving drug after a stroke two years ago, I would do whatever I can to resist any change. Good luck to you. Don't worry if you irritate some functionary, it is not their life and well being that is at stake!

ozziebob profile image
ozziebob in reply to oscarfox49

If you read the original "switching" article as Posted by Suze43, you will see a generic Apixaban is not far away. What happens then? everyone back on the bus to Apixaban? healthunlocked.com/afassoci...

oscarfox49 profile image
oscarfox49 in reply to ozziebob

If it is genuinely identical to Apixaban I would have fewer worries. But many 'generics' have things bulking them out which means they don't work in quite the same way. I found that the Fluoxetine I was given caused me many problems until I switched back to the original brand which was properly soluble, even though the active ingredients were identical. Surely the price of the original 'brand' also comes down when there are generics available.

Interestingly this study from Spain suggests that Endoxaban is more costly than Apixaban which is a tad more effective.

ncbi.nlm.nih.gov/pmc/articl....

ozziebob profile image
ozziebob in reply to oscarfox49

Thanks for the link. The Summary Conclusions included ...

"In a 1000-patient cohort, apixaban 5 mg bid versus edoxaban 60 mg could avoid five strokes, six major bleedings and 29 clinically relevant non-major bleedings (CRNMBs).

Compared with edoxaban 30 mg, apixaban could avoid 21 strokes and two SEs. An increase in bleedings was observed with apixaban (seven haemorrhagic strokes, 48 major bleedings and 17 CRNMBs)."

It's the final part about Apixaban's increase in major bleedings over Edoxaban 30mg that has caught my eye.

I thought the reason I was recently recommended Apixaban by a large London Haematology Clinic was because it was best at preventing potential future major bleeds. That is what I was told was the best choice for me, specifically because of my previous unexplained chronic bilateral subdural haematomas in late 2016.

The article directly contradicts the information I was given in Haematology.

An excess of "48 major bleedings" for Apixaban compared to Edoxaban 30mg !!!!!

Am I understanding this article properly?

If I am, where does that leave me going forward? (I must add I haven't started taking any DOAC yet)

Auriculaire profile image
Auriculaire in reply to ozziebob

It depends on what they compared. If they compared full strength Apixaban (5mg twice a day) with 30mg Edoxaban that is not really a fair comparison as 30mg Edoxaban is the half dose. A fair comparison would have been to compare the half dose of Apixaban (2.5mg twice a day).

Auriculaire profile image
Auriculaire in reply to ozziebob

Apixaban is the generic of Eliquis. Mine went to the generic a few months ago.

ozziebob profile image
ozziebob in reply to Auriculaire

Not sure what you are saying? The article referred to about "switching" says ...

"at the beginning of June 2022, Teva UK launched a generic version of apixaban"

... then goes on ...

"The availability of generic apixaban will offer the NHS considerable savings and the news could impact on prescribers’ willingness to follow along with the IIF indicators.

“There will be considerable time before a change in the drug tariff, while the cost saving for edoxaban is here now,” says Fay.

“It will, however, derail the IIF … as people will be concerned that they will do work with edoxaban and then be asked to redo it all again with apixaban, a little like the back and forth with simvastatin and atorvastatin in the 2000s.” "

It was the new generic of Apixaban mentioned above in this article that I was referring to in my Reply to oscarfox49, along with the above quoted potential ridiculous back and forth prescribing between these generic versions of Edoxaban and Apixaban (the Teva UK product).

I not sure your comment that "Apixaban is the generic of Eliquis" devalues anything I wrote in my reply to oscarfox49, nor the clarifications offered in the relevant quoted article.

Auriculaire profile image
Auriculaire in reply to ozziebob

Apixaban is the actual name of the drug. It is one of a "family" of drugs that all have names ending in "ban" . The others are Rivaroxaban and Edoxaban. In addition they have brand names while they are still on patent and being made by the companies that developed them. Rivaroxaban 's brand name is Xarelto and is made by Bayer and Edoxaban has two brand names Lixiana and Savaysa and is made by a Japanese company I think. When a drug goes generic it can be made by other companies and goes under it 's actual or generic name. Teva is an Israeli company that is very important in the generics market. At the moment my packets of Apixaban have "Eliquis" in big letters with "Apixaban" in smaller letters underneath. But the generic version will just say Apixaban.

ozziebob profile image
ozziebob in reply to Auriculaire

I'm impressed with your general knowledge on all kinds of health matters, but I'm also sure you understand the point I was making about cost basis of the switch to Edoxaban, that when a "cheaper" Apixaban becomes available to the NHS (and cheaper than the current Edoxaban) then doctors could well be scrambling, for cost reasons and incentives, to switch patients back to Apixaban (or whatever it is then called). Disagree by all means.

Auriculaire profile image
Auriculaire in reply to ozziebob

I have dug up some more info on this. Apparently there is an ongoing court case about challenges to the patent that Bristol Myers Squibb holds on Apixaban and this is unlikely to be resolved until well into 2023. In the meantime the proposed Apixaban generic (it does not mention Teva) is very little cheaper than the brand Edoxaban - not nearly as cheap as a generic should be - and is also in short supply. Neither of these two matters is likely to change in the near future according to the Medicines Value Team of the Commercial Medicines Directorate for NHS Enngland and so their conclusion is that "Edoxaban remains the best value DOAC by a considerable margin". Also the primary patent expires on Edoxaban next year so an even cheaper version could be available. So it's unlikely that it will be all change again.

ozziebob profile image
ozziebob in reply to Auriculaire

Again, very impressive research. It all helps. Meanwhile I'm still thinking about the Spanish research article (referred to earlier in this Post) that revealed I might after all be better on Edoxaban than Apixaban on the grounds of a reduction in the "major bleed" risks.

I seem to have come "full circle".

Auriculaire profile image
Auriculaire in reply to ozziebob

If you go into table 1 of the study it shows that the rate of intercranial bleeds was lower for Apixaban than Edoxaban but the rate of all other types of bleeds was much higher. So if you are worried about brain bleeds it looks like Apixaban is still safer plus it has a better rate for preventing ischaemic strokes andthere were less MIs too. Given that other types of bleeding are much easier to fix than brain ones and your previous history it looks like Apixaban would be your best bet.

ozziebob profile image
ozziebob in reply to Auriculaire

Thank you for your persistent with me. I was taking the figure from the Conclusions at the top which shows Edoxaban having much less "major bleeds".

Doesn't "major bleeds" include intracranial bleeds?

I will need to read the whole article to try to understand the difference. Confusing (for me)!

It will make a big difference to my thinking.

Auriculaire profile image
Auriculaire in reply to oscarfox49

Not sure if Edoxaban is prescribed here. When I had to go on an anticoagulant my doctor offered me a choice of Eliquis or Xarelto ( I had previously tried Pradaxa but it gave me bad gastric side effects). He said they were similar but as to Xarelto he muttered " je n'aime pas la boite" meaning Bayer. That was in March 2019. Since then the Eliquis has gone generic.

Speed profile image
Speed

As we all know, the NHS is under enormous pressure, and like any public organisation paid for by us taxpayers, I would expect it to be cost efficient and look for value for money. In a situation where there is no clinical difference in outcome or additional risk, they should go with the cheapest option and as patients we should support that. Unless suspected or know impacts of changing, including a history of intolerance or bad experience, should we not try the alternatives with the proviso that we can change back should there be a -ve impact? There may be a small minority of patients who experience difficulties but that automatically shouldn’t stop anyone from trying. There is of course a risk of perceived / psychosomatic impact from a reluctance to change also to consider.

BrotherThomas profile image
BrotherThomas in reply to Speed

In my case, I'd be more concerned about where I could get help if I was one of the unlucky ones who suffered severe side effects.

kkatz profile image
kkatz

Is there any evidence that edoxaban is more dangerous or has more side effects?I have been on it since 2017 .I am also sensitive to new drugs and often having a problem finding drugs that I can take.Not aware of any problems tolerating.

BrotherThomas profile image
BrotherThomas in reply to kkatz

Since there is no antidote to an overdose of edoxaban whereas there is for the other anticoags, I'd consider it to be a more dangerous drug.

Sim22 profile image
Sim22

Hiya, Apixaban is one of the new anticoagulants that doesn't require monitoring. I'm on Rivaroxaban, the difference between the two is my drug is administered one a day yours is twice daily. They are both quite expensive drugs but much better than Warfarin

Silvasava profile image
Silvasava

I've been on Edoxaban since 2019 after a stroke. No issues with it at all and during that time I've had tooth extractions with no problem either. HTH

BrotherThomas profile image
BrotherThomas in reply to Silvasava

Thanks for that, hope it stays that way for you.

Countrydweller2 profile image
Countrydweller2

Here they are very keen on Apixaban, despite side effects that ruined four months of my life it took a great deal to change to Xarelto. No mention of Edoxaban.

dunestar profile image
dunestar

I changed voluntarily to Edoxaban because Rivoroxaban was giving me nose bleeds. So far it's suiting me very well. No bloating or other stomach issues and I have a hiatus hernia.

BrotherThomas profile image
BrotherThomas in reply to dunestar

Glad to hear it suits you, hope it stays that way

Qualipop profile image
Qualipop

"bring then into line with current prescribing guidelines". means exactly what you thought- it's cheaper. Put your foot down and say no. I had the same problem and some rather nasty arguments with a G P who didn't know me at all but was insistent on stopping my painkiller after 20 years. He had no idea of he dose or time span. Stopping cold turkey would have killed me never mind getting bad effects. AFraid I ended up having to put in a complaint to the practice manager but you should be fine just speaking to a GP and explaining what problems you had and you're not willing to risk it all starting again. They are playing with your health to save money. Unless he can give a plausible medical reason why you need to change, put your foot down.

BrotherThomas profile image
BrotherThomas in reply to Qualipop

Thanks for that, I agree that they're playing fast and loose with patients health just to save a few ponds. Unfortunately, it's now impossible to have a conversation with a GOP at my practice these days. You have to submit a form on your mobile first and then someone decides if you're sick enough to have an appointment. Given that the last time I asked for one to discuss the nasty side effects of warfarin I was told by the receptionist that I wasn't sick enough! I won't hold my breath..........

Qualipop profile image
Qualipop in reply to BrotherThomas

Good grief, mine are not that bad. Admittedly the first one only did a phone consult for a very erratic heart beat but the second had me in face to face, listened to it and did an ECG- still no answers though missing every 3rd beat constantly. You just have to be insistent

BrotherThomas profile image
BrotherThomas in reply to Qualipop

Just another example of the NHS lottery but I'm glad that you managed to see someone, so hopefully, you'll get some answers soon.

Qualipop profile image
Qualipop in reply to BrotherThomas

Ours have been pretty good right through the pandemic. More phone consults of course but plenty of face to face appointments. It's the hospital that's been worst.

Karendeena profile image
Karendeena

Hi Brother Thomas, yes this happened to my mum, exactly the same process wanting to change her from Apixaban to Edoxaban and YES it is a cost cutting exercise as Apixaban is the most expensive of the DOACs. I had to go to mum's consultant who prescribed the Apixaban and he wanted her to stay on Apixaban and relayed this to the GP practice. Reluctantly they agreed. I am on Apixaban too and I wouldn't change

BrotherThomas profile image
BrotherThomas in reply to Karendeena

I'm glad you got your mum settled OK and glad that her cardio consultant came out on her side. Unfortunately, my consultant won't talk to me except for pre-arranged monitoring of my condition. leaving a message with his secretary always goes unanswered.

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