rivoroxiban : just read a scary article... - Atrial Fibrillati...

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rivoroxiban

Debbie-offbeat profile image
41 Replies

just read a scary article in Sunday mail which claims rivoroxiban doesn’t work as well and has some serious implications

As I have just gone back into af

Should I ask to be changed to different anticoagulant

Thank you in advance

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Debbie-offbeat profile image
Debbie-offbeat
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41 Replies
Jalia profile image
Jalia

I've just noticed that online . Husband is on Rivaroxaban but I'm on Warfarin. Don't panic. Give it time and wait to see what advice NICE offers.

Debbie-offbeat profile image
Debbie-offbeat in reply to Jalia

thank you

Rainfern profile image
Rainfern

Personally I wouldn't believe anything printed in the Sunday Mail without careful research and going to source. But if you wait until NICE make a decision you could have quite a wait. Why not consult your doctor to express your concern and get the ball rolling?

ObiDyer profile image
ObiDyer in reply to Rainfern

Agree about the Sunday Bile but I would not trust any media outlet in isolation! Also agree that discussing with a medical professional (rather than a hack journalist) is the sensible way to proceed

BobD profile image
BobDVolunteer

The only problem with rivaroxaban is when people do not take it as specified ie with a full meal containing some fat. There was a bulletin about this a few years ago after a few people had strokes due to not following the instructions. A cup of tea and a biscuit really do not cut it.

Its your call. 13 years ago these NOAC's didn't exist other than in the development stage in a labroratory. Now, they are flavour of the month with a very high percentage of NHS surgeries. Whilst they have all gone through a great deal of research and testing they are still a very young and unproven drug. As they are becoming more frequently used by the healthcare community the more we read of issues and problems.

My GP has tried to get me off Warfarin onto these newbies. I didn't decline ...just absolutely refused to come off Warfarin. Warfarin has disadvantages but Roche manufacture and market the Coaguchek XS home testing kit which gives the patient absolute freedom. Warfarin is at least 50 years old. I've been on it without problems fof 13 years, others on here have been much longer.

John

jeanjeannie50 profile image
jeanjeannie50 in reply to

I feel exactly the same as you John, totally trust Warfarin and have been on it for many years, have my own home testing kit too.

Jean

in reply to jeanjeannie50

Hi Jean, glad you're into the home testing kit ........... makes a world of difference. I like the freedom it gives me, especially as I'm still working. I do my jab shortly after I get up or before I leave home, phone the results through to my INR Nurse at my surgery, a few hours later I get a return phone call advising me next test date and ongoing dose of Warfarin. Brill !

Stay safe and well.

John

Jalia profile image
Jalia in reply to

Same here John. I've been on warfarin for about 20 years and self test. No probs. I'm constantly being asked by hospital docs why I haven't switched to a DOAC. My reply is always along the lines of " if it ain't broke why fix it ?!"

in reply to Jalia

Exactly right Jalia. One of my arguments too. The other is of course the kick backs 'Big Pharma' give to health services of many nations. I suppose one might call kick backs - sales promotions 😂😂😂😂John

Auriculaire profile image
Auriculaire in reply to

When the clinical trials were done for the DOACs they were trialled agsinst Warfarin. But the standard for the Warfarin was that the patient should be within the correct INR range for 65% of the time which they reckoned was about average for Warfarin users. At this rate they were found to be modestly superior in terms of stroke prevention, bleed prevention etc. But since then I read some trials have been done using a standard of 95% in INR range which is much more achievable with self testing and with that they had no superioity over Warfarin. The only advantage is convenience. Also in one of the trials run in China (can't remember which DOAC) there was some shenanigans with badly calibrated INR testing which would probably have skewed the results.

in reply to Auriculaire

I believe that an INR in range of 65% is absolutely impossible to achieve without deliberately falsifying/ manipulating data in favour of DOAC's.

My average for all 2022 has been 88.9% in range, which includes when I had to cut out and stop Warfarin to get my INR down to around 1.7 prior to cortisone injection in right shoulder. If I had not had to do this I would have been 100% in range.

The Australian Government Theraputic Drugs Administration have produced a Health Advisory on one of these DOAC's ..... Pradaxa I think. Causing deaths in patients of certain ages.

southkorea profile image
southkorea

My pharmacist boyfriend advised me to stay on warfarin as it was well tried and tested!

secondtry profile image
secondtry

Apixaban seems to be the favourite here if you want to stay on DOACs. 4 years ago my cardiologist told me Rivaroxaban was no good due to 'research in the States' and he gave me a Edoxaban PIP instead; he chose this particular alternative due to cost not patient wellbeing!

pusillanimous profile image
pusillanimous

You will always find some anti feeling and article about any drug, especially when millions of people are taking it. I believe that when Rivaroxaban was first marketed there were a number of cases against Bayer and J &J over brain bleeds. With Warfarin, my pharmacist still refers to it as 'Rat Poison' because that was its first use. Go to the Internet and you will read stories of people on Warfarin vomiting blood etc. etc. These drugs are used as anti-coagulants, so surely if you are worried about it, just have more frequent scans to see if there are any clots present.? It is frequently used for DVTs. and is very successful. I often read the Daily and Sunday Mail on line and am sure their medical articles are there like most of their articles, for sensationalism and to frighten people. Xarelto has just come off patent, and the generic is much cheaper, even the one available here in South Africa which is made by Bayer and looks the same, so I can't help wondering if there is a commercial aspect to this - if many many manufacturers start making it, it will be as cheap as Warfarin and that would be bad business for Bayer and J&J! Big business is ruthless and brown envelopes are vey effective !

Ppiman profile image
Ppiman in reply to pusillanimous

It as good to read such a well-balanced and considered post. Thank you.

Steve

SuziElley profile image
SuziElley in reply to pusillanimous

Love your comment « Just have more scans » in the UK and on the NHS are you aware of the waiting time for a scan, that’s if your doctor will refer you for one?

pusillanimous profile image
pusillanimous in reply to SuziElley

Can't you have the scans done privately? I live in South Africa, so I would just phone my Cardio's office and make an appointment (private practice). My AF is familial, and I know my sister who is still in the UK (I left when I married) sees an EP regularly and privately. It was just a suggestion to help relieve people's worries. The other thing is the test they are referring to was done in hospitals with the drug being used post operatively and at a different dose than the maintenance dose for AF.

SuziElley profile image
SuziElley in reply to pusillanimous

A scan here in the UK costs from £250 so not within reach of many these days…. Your sister is very lucky to be able to afford such private health cover.

Dadtoalad23 profile image
Dadtoalad23 in reply to SuziElley

a CT angiogram in the uk is around £2,500 an echocardiogram around £550 mark.

SuziElley profile image
SuziElley in reply to Dadtoalad23

I was quoting the cost of a general MRI. A close friend had one this week. I’ve no doubt these other scans are this expensive though. Many thanks for the information.

Dadtoalad23 profile image
Dadtoalad23 in reply to SuziElley

that’s a bloody good price for an MRI ! Although I doubt it was a Cardiac MRI ? They’re more inline with cardiac CT prices.

SuziElley profile image
SuziElley in reply to Dadtoalad23

no, not a cardiac mri

oscarfox49 profile image
oscarfox49

There's this report from about year ago, but 'statistical significance' means a 3 in 1000 greater likelihood of problems compared to Apixaban. Why does your doctor not give you the latter?

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

Sfhmgusa profile image
Sfhmgusa

my Dad was on rivaroxaban and he had quite an unpleasant bleed from his gut (He had diverticular condition as well ) The kind soul passed on both his Afib and DVC to me ! and having seen both Riveroxyban and Warfarin I am on Apixoban which is so side effect free I sometimes wonder if they are placebos ! 😀 Seriously I would ask about apixoban it is trouble free for most users that I have heard from

reinaway profile image
reinaway in reply to Sfhmgusa

I would second that!!😆

philcollis profile image
philcollis

The 'Mail' would not be on a list of mine for producing scientific evidence....the article refers to a particular research paper that was submitted as part of the evidence for NOAC use. Some of the data used in this particular piece of research is being questioned by the regulator and clarity is being sort. There were many research papers published during the NOAC trials circa 2011. I participated in some of this research following bi-lateral PEs during a hip replacement operation and have been taking rivaroxaban daily since 2011.

Personally, if I had any concerns I would seek advice from my HCP - I think it's good to know that regulators do monitor/follow up on the efficacy and safety of drugs and medical devices i.e. MHRA. Have a great day ;-).

Ronnieboy profile image
Ronnieboy

Presumably if you have been on rivoroxiban for years and havnt had a stroke,it either works or you don't need anything in the first place.

Ecki profile image
Ecki

I was on rivaroxaban for 6 years until November last year. I developed a blocked vein in my retina, with some sight loss, and then 4 weeks later had a TIA. I didn't understand how this could have happened as I had assumed I was fully protected by the rivaroxaban. Cardiologist was mystified, said it shouldn't be possible. The stroke doctor immediately took me off rivaroxaban and put me on apixaban. He said rivaroxaban only gives 70% protection but other DOACs give more.

Cha275rL profile image
Cha275rL in reply to Ecki

I was on it for a year, and I took it faithfully with a meal, but I had a TIA in the swimming pool. A very small one admittedly, and the doc said I was just unlucky, but changed me to Edoxaban. Thankfully have been ok since.

PICCASO profile image
PICCASO

I was put on this from warfarin 3mg a day by my cardiologist after having ectopic beats, after 3 weeks had severe back spasms was off work, 3 weeks I'm a 79 year old plumber, so was put back on warfarin, no problems since, it's one of the side effects I read

Tapanac profile image
Tapanac

I wonder how you can tell which is a placebo rather than the real apixaban?? When I collect my prescription quite often the box is different????

Originally I was given rivaroxaban, but I kept getting urinary tract infections, so I was changed to apixaban as it is supposed to be kinder to the stomach and brain

All the best

Pat

Qualipop profile image
Qualipop in reply to Tapanac

The different boxes are simply because the same drugs are packed by different companies

Tapanac profile image
Tapanac in reply to Qualipop

so are they made by different companies as well? Hopefully they are all as good as each other

Thank you

Qualipop profile image
Qualipop in reply to Tapanac

Not always; look at the small print on the box for manufacturer. SOmetimes they are by different companies but often not. When I was on furosemide I had problems with those by certain manufacturers but I found three different looking ones all made by the same manufacturer that were fine. The manufacturers sent them out to different places for packaging but the boxes always say who actually made them.

MarkS profile image
MarkS

The Lancet article to which the Mail refers is here:

thelancet.com/journals/lanc...

The Mail does seem to have reported correctly. In the trial (Record4), 1227 of 3148 patients might have been randomised postoperatively rather than preoperatively, as stated in the protocol and the published Article. So false information was provided to the FDA. Also, there was under-reporting of serious effects.

There do seem to have been a lot of problems with trials of the NOACs. On the Apixaban trial, there is this article:

cardiobrief.org/2011/09/23/...

where the Aristotle trial of Apixaban is criticised. This includes the vital fact that apixaban showed no efficacy over warfarin in 7,000 European patients, yet this was never mentioned in the report that went to the FDA for approval.

Problems with the Rivaroxaban trial had been previously picked up in the BMJ "Rivaroxaban: can we trust the evidence?" bmj.com/content/352/bmj.i575

where it was found that a faulty INR device was used on warfarin patients in the trial.

Major flaws were also found in the Dabigatran trial: pubmed.ncbi.nlm.nih.gov/224...

These revelations really throw doubt onto the effectiveness of the NOACs. It would appear that money talks where there are billions of dollars at stake. I'm not moving from warfarin.

Dadtoalad23 profile image
Dadtoalad23 in reply to MarkS

Apixibans only real benefit to warfarin is not needing blood tests. As you say some of the other findings are weak in regards to less bleeding risks.

I think it’s widely known that Rivaroxaban isn’t as effective and has a higher bleed risk in comparison to Apixiban.

I was on an American physicians sub on Reddit and they predominately said where the patients Insurance allowed it, they would always prescribe Apixiban over Rivaroxaban. Main reason they cited was it allowed better coverage rather than one pill a day. The one pill a day solution they mainly felt was a gimmick and used as a point of difference to sell Rivaroxaban and they felt the trials weren’t conducted properly.

There’s a need for independent regulatory agency’s that are free of pharma funding, that use the highest standards in science to protect public health from unnecessary medications. A lot of medications that come into the market are just tweaked to secure new patents.

After researching my prescription I asked to be moved after two weeks to Apixiban. I’ve been on Apixiban for a few months.

PICCASO profile image
PICCASO

I had muscle spasms in my back went back to warfarin

frazeej profile image
frazeej

I have been on rivaroxaban (Xarelto), but recently switched to apixaban (Eliquis). I haven't had any side effects from either, but I switched from Xarelto to Eliquis because of the more convenient dosing schedule. The once a day dosing with Xarelto did not fit with my rather eclectic eating habits and times, and the 2/day Eliquis is much more satisfactory.

Janith profile image
Janith

Eliquis is the only way to go. Zero side effects.

I am sorry for your loss. To put the discussion in perspective ....perhaps ( for whatever condition your mother had ) it would have been better for your mother to have already been on Warfarin before the first TIA ...chances are the Warfarin would have had a beneficial effect all round.

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