Hi there, I take Bisoprolol, Flecainide and until recently Edoxaban anticoagulant . However, spending much time in France I’ve found that Edoxaban is not accepted as a safe drug and I cannot get it in France . I changed to Apixaban which is available , and was previously recommended by my electro-cardiologist in the uk. Since I started Apixaban I have found I get swollen ankles during the day. They are better when I do exercise , and they go right down overnight. Has anyone else found this swollen ankle problem with Apixaban please?
Apixaban: Hi there, I take Bisoprolol... - Atrial Fibrillati...
Apixaban
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Sportfix
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Hi,
I was put on Edoxaban by my GP as she considered it compatible with some painkillers she had out me on.
It was a disaster, nightmares, vile nightmares, loss of sleep every night. Soon abandoned that and the pain killers. Returned to Warfarin AND returned to my old style pain killers ( CoCodomol 30/500 ) .... been brilliant ever since.
I would never ever touch any of these NOAC's ....... sure the manufacturers have got them through legal health government requirements but in my view they have not had sufficient exposure to humans nor are all the documented side effects complete. More and more on this forum do I see issues raised in the context of these 4 NOAC's.
I think the side effects of the DOACs have been underplayed-particularly the digestive issues and increase in musculoskeletal pain. I suspect this is because with the ever increasing rates of afib and the need for anticoagulation they will be making more profits for the manufacturers ( who are always eager to downplay any side effects of their products anyway).
G'day Auriculaire,
Well, it wouldn't be the first time ( even in my lifetime ) that Big Pharma have ridden the coat-tails of the medical condition of a patient - and often very tragically !
I must remember your comments on musculoskeletal pain and do a bit more research on that given my increased shoulder problems since last November/December and the reluctance of the problems to respond to steroid injections.
John
I feel very differently. DOAC drugs were heavily researched and tested and have been around a long time now and the side effects profile is very good indeed.
Sure
Steve,
Yes I agree these NOAC's were heavily researched and tested .... but only to get them approved by Medical Institutions such as NICE to get them approved for use for humans in whatever country. As far as being around for a long time ....... not really .... Dabigatran; the first DOAC was approved in the UK in 2008 and was shortly followed by the approval of rivaroxaban in the same year [2], apixaban in 2011 [3], and edoxaban in 2015 [4, 5]. Despite warfarin being used for almost 70 years [6], DOACs are slowly but surely replacing warfarin [7].5 Mar 2021
In the world of anticoagulants these are short time spans - compared to Warfarin (70 years ). I've been on this forum and its Yahoo sponsored predecessor and I can only recall them being discussed on this forum since around 2012. Finally, my GP has now agreed to return me to Warfarin and sign off repeat prescriptions for Warafrin and test strips ( I self test ).
Probably not for any medical reason other than to get me outta her hair !
That's true but perhaps a rather too partial picture to be helpful. I worked in the industry back then and a Welsh subsidiary of our company was the original maker of bovine warfarin if I recall. I remember DOAC drugs being first mooted and it was an exciting time as warfarin required expensive and onerous INR testing.
DOACs as a class were discovered "officially" in the early 90's and went through an enormous amount of refinement and testing in-house before being tested on human subjects from the early 2000s, and were only much later given approval in 2008 in the UK, as you say.
I think they are an example of our wonderful medical research scientists finding yet another Very Useful Drug.
Steve
I was on the Yahoo forum those years ago. 👍
I also went back to Warfarin after a short period with Apixaban. Awful.
Phil
Phil, I think that Warfarin has been unfairly demonised, of course that suits the mindset of many pharmaceutical organisations.
Once my AF had been diagnosed and I was discharged back to the care of my GP I decided to take control of things - as much as I could - I bought myself a Coaguchek XS handheld device with the full support of my Surgery INR Clinic, and I test myself whenever, wherever - I even take it with me on holidays back to Australia. Communicate with my INR clinic via email. I still use this device. Fortunately my present GP has agreed to my ditching Edoxaban and returning to Warfarin and is ( I suspect reluctantly ) happy to work with me.
John
You have a very negative view of one of our most useful and successful industries. Where would any of us be without innovative drugs?
Warfarin is difficult to dose accurately and requires onerous and relatively expensive INR tests. Many elderly people make risky visits each week or two to their GP surgeries just for this test.
Steve
That's as maybe Steve, but equally as many do not visit their surgery. I am one of a great many who self test at home, with my own Coaguchek device ( which I bought without any form of subsidy from anyone ) and supply of test strips, with the full support of my Surgery and its INR Clinic and my GP. I have had absolutely no problem at any time over 14 years ..... in fact I have had to switch it on and off on 4 occasions for various surgical procedures, including knee replacement. I even hold down a part time job driving buses on College services around some of the most crap roads in Britain, made worse by tourists in season. My employer and DVLA are perfectly aware of my medical condition and ALL my medication. I also have a medical annually to meet legal and safety requirements .... and talking of elderly - I hit the magic 80 in September.
Lets put Warfarin home testing into perspective .......... its no harder than blood sugar testing for a diabetic.
Hate to bring it up but look how successful Thalidomide was in its day - so much for useful and successful industries.
John
If your last comment truly reflects your view of the industry then I'm surprised you take Warfarin or any other medications. I'm no fan of Big Pharma but if you've ever done any work on your family history you don't have to go back too many generations to see what life expectancy was like for our ancestors - including the high rates of infant mortality. Tragic! Too often we take for granted what we have.
Hi,
Odd that you should mention geneaology because I do .... and have managed to get my paternal side back to early 1700's. Given the absence of Big Pharma ( or any Pharma ) in those days I reckon a life expectancy of 70 ish is pretty damn good. In more recent times my paternal grandmother managed 102. There were two exceptions, my father who kicked off at 78, all the others kicked off at around 90/95 and one of his Uncles who had a high rate of infant mortality in his family. Earlier than 1700's can't say. Mind you they were all country folk (East Anglians), none lived in dirty, stinking, river polluted London as it was in those days.
As for my comments ..... why would I not take Warfarin ... tried, tested and proven in humans for around 70 years, these NOAC's are developing a not so good a track record and on this forum alone - increasingly - do I read of more and more issues coming to light ( including my own with Edoxaban ) ............ AND that is only those that are mentioned on this forum. God knows what the real state of play is with patients outside this forum about which we hear nothing because Big Pharma chooses to keep schtum about it.
Anyway, I've had my shot at Edoxaban - completed and submitted my Yellow Card on the stuff.
"I reckon a life expectancy of 70 ish is pretty damn good"
According to Wikipedia, life expectancy in 18th century Britain.... "For most of the century it ranged from 35 to 40; but in the 1720s it dipped as low as 25. During the second half of the century it averaged 37, while for the elite it passed 40 and approached 50."
"why would I not take Warfarin....."
I was referring to all of your medications, including Warfarin, given you effectively questioned the success and usefulness of the pharmaceutical industry i.e. if they're not useful and/or their products aren't successfully treating you then why are you using any of their products?
As previously stated, I'm not a fan of Big Pharma but would we be better off without them? Clearly I think not but there's definitely additional checks and balances required, including stronger laws and penalties. Do you have an alternative to profits for motivating companies and/or individuals to develop new drugs?
"God knows what the real state of play is with patients outside this forum about which we hear nothing because Big Pharma chooses to keep schtum about it."
There are numerous studies on NOAC's/DOAC's, including many comparisons with Warfarin. I always look at the funding of studies, declarations of conflicts of interest and whether peer-reviewed.
However, we're all different and the results of any of these studies may not be replicated for us. Clearly you believe Warfarin is your best option - but that doesn't mean it's the best for everyone.
I don't doubt it at all in terms of studies undertaken. They would not be of any interest to anyone unless they were on the medication route. I have also acknowledged many times on here ( I've been on this forum in all its incarnations for donkeys years ) the fact that in the same way NOAC's aren't suitable for everyone - nor is Warfarin.
I bet there is one resource you haven't looked at and that is the Australian Government Drug Administration study on the mortality effects of Dabigitran. For some folk that wasn't their best option. They're dead!
Unfortunately, death is a very real possibility with all AC's i.e. Warfarin and NOAC's. If it wasn't, then almost everyone would be using them for protection from strokes and other life-threatening blood clots. As it stands though, even some people who have AF aren't put on AC's not because they don't have increased risk of stroke but because the risk of major bleeding and possible death from using AC's exceeds the risk of stroke and possible death. AC's are serious drugs. They can save your life and/or they can kill you. Unfortunately, deaths although a tragedy are to be expected. However, they should be in line with the risks you sign up for when you take these drugs. If Big Pharma (or any business) deliberately misleads users and it directly results in their death then those responsible within the company should face criminal manslaughter or murder changes. Don't worry about fines - lengthy jail terms would be a more effective way to deter such behaviour.
My CHA2DS2-VASc Score is zero but I am fast approaching the age to seriously consider taking AC's. However, I'm hopeful the REACT-AF trial will be successful and I will only need PIP AC as I don't really fancy taking any of the AC's every day for the rest of my life.
Life expectancy statistics for our ancestors were influenced by high rates of child mortality due to infectious diseases in infancy. These were again influenced by insanitary conditions, women having too many children , poverty and after the industrial revolution lack of sunlight. On the contrary for those who survived childhood, men who survived wars and women who survived childbirth there were far fewer "diseases of civilisation" -treatment for which is the bread and butter of Pharma. The business model of Pharma is not to "cure" anything but to have the maximum number of people take drugs for life like blood pressure reducers , statins and psych drugs - the latter as a consequence of the deliberate medicalisation of negative life experiences.
According to a new study led by the World Health Organization (WHO) "Vaccines Have Saved 154 Million Lives, Mostly Babies, Over Past 50 Years"
"Those vaccines fight diphtheria, influenza, hepatitis B, Japanese encephalitis, measles, meningitis A, pertussis, invasive pneumococcal disease, polio, rotavirus, rubella, tetanus, tuberculosis and yellow fever."
I suppose you'll say that's also part of the business model of Big Pharma - people live longer so increases the opportunities to supply them with drugs - including in their old age when they are likely to have several conditions requiring medication.
Anyway, the question remains.... would we be better off without them?
I have very little faith in the WHO. Especially given that they receive a large chunk of their funding from Mr Vaccine Bill Gates. It is a corrupt organisation headed by a man with a very shady past and hell bent on extending their power and influence. Part of the business model of Pharma was to pressure governments to pass legislation that made them immune to lawsuits from people who had been damaged by vaccines. That way they don't have to bother to make vaccines safer - which would indeed impinge on their profits.
...... would we be better off without them?
As companies - yes I think we would. There is nothing fixed in stone that says that medical research has to be controlled by private bodies whose bottom line is profit. Also these days they get a great deal of public money. Take the covid vaccines. The Pfizer mRNA was not developed by Pfizer but by Biontech which received large injections of money from the German government. Ditto the partnership beyween Moderna and the American government. This money comes from taxpayers. But are the profits being redistributed to the taxpayer? No they go to shareholders. The NIAID has received some royalties from Moderna.
I was only reading yesterday about the "fallacy of incomplete evidence" following my dear brother (a solid and solidly foolish conspiracy believer) telling me all about "contrails". It seems to me that you might be guilty of avoiding important evidence here.
INR testing is for some, as you rightly say, straightforward; but it is significantly different from glucose testing since it generally has to be done by a nurse, and, except in special circumstances, in a surgery. The costs to the NHS are high and the risks (and costs) to the elderly in travelling for testing is accepted as significant.
The tragedy of thalidomide is also very much more complex to be raised as you have, I would argue, not least since it remains on the WHO list of essential medicines. Launched in 1957, it was withdrawn around three three years later after fears were raised over it. The teratogenicity was missed in testing because in those days such testing was poorly understood, yet, once it was identified, the drug's licence was rapidly suspended and the excellent yellow card system was launched in its wake. The tragedy was compounded by the need for a fight for proper compensation.
I feel strongly that medical research scientists are among the saviours of humanity and that the pharmaceutical industry, occasionally made corrupt by its need for shareholder financing to cover vast R&D costs, is, in general, still to be lauded.
Steve
Steve,
I think this topic has runs its course because it seems to me you aren't on this planet in terms of Blood Sugar testing and Warfarin and INR testing .......... your statement ...... "INR testing is for some, as you rightly say, straightforward; but it is significantly different from glucose testing since it generally has to be done by a nurse, and, except in special circumstances, in a surgery. The costs to the NHS are high and the risks (and costs) to the elderly in travelling for testing is accepted as significant."
That is a load of tosh .... even where I am - one of the poorest counties in UK. My surgery operates a modern practice whereby those that want or need to visit surgery for their Blood Sugar testing or INR do so, those that want or need to do so can self test from home, phone or email their results and the surgery feeds the data into their INR Star software which produces a new test date and a new dose going forward until next test date. On my trips to Far East and Australia I just take my kit with me and do the business and phone or email the results back. For me the biggest problem is remembering the time zone I'm in 🙂.
I do my blood glucose testing with an AccuChek handheld device, drip blood onto a test strip, get an instant test result ............ and the finger prick is done by a device which punctures the skin on the finger .... IDENTICAL TO A COAGUCHEK DEVICE.
I think you said you had spent time working in the pharmaceutical industry .... perhaps you are still to close to it, given your depth of knowledge of blood sugar testing.
No point in continuing this discussion in the circumstances.
John
Your GP practice is certainly not typical of those in our area. What I have explained is the case as I know of it from trying to help three friends, all elderly, one on warfarin and two with diabetes.
And, just for the record, I never write "tosh". I can, though, sense a dogmatic mindset when I see one, so, yes, you are right in that there's little point in continuing.
Steve
I would describe them as one of the most ruthless and conniving industries on the planet and this does indeed contribute to their success. The billions in fines for chicanery that all the top companies have been subject to testifies to their dishonesty. Pfizer tops the list. There are millions of people taking cocktails of drugs for conditions that lifestyle modification would sort out with the only side effect being effort required. Direct advertising to consumers as one has in certain countries helps fuel this and should be banned. There should be far greater independent oversight of clinical trials. There is actually very little real innovation in drugs these days. Most of the "new" drugs are tweaked "me toos" as this is much more profitable.
At least with Warfarin there is a measuring system that means you are taking as much or as little as is needed to keep your level of anticoagulation adequate and with a self testing machine there is no need for frequent pesky clinic visits . With the DOACs you get a one size fits all drug. The testing on humans is what counts not the pre clinicals. And it is in the postmarketing period for a drug that problems typically show up as you well know. The DOACs are still relatively "young".
The evidence seems to be that the INR test isn't really accurate enough in the sense that in-between times, the INR is unknown. From my reading of this, it seems that excess strokes are the result. Self-testing is good if you can afford it, and if you are up to doing it. Many elderly and frail people are both not well off and couldn't cope with home testing.
It's "one size fits all" for good reasons that owe to the action of the drug compared with warfarin.
I've said before that I agree with your sentiment in many ways but it is so that in the business world, the need to raise finance and to make profit is a legal requirement in many countries and this has warped pharmaceutical companies at times corrupted some in them, even. I wish there were a better way but regulation and the law are what we have and they are increasingly sufficient.
Steve
Post marketing studies for Warfarin versus DOACs have ahown that with self testing and keeping the INR within range for 95% of the time there was no inferiority of Warfarin. The clinical trials only required a level of 65 % of time in range and for one of them (I think it was Rivaroxaban ) there was some controversy about one of the trial centres in China having faulty machines for the blood test. I would think elderly and frail people would be better off with a finger prick done at home than traipsing out to get their blood drawn out of a vein. I can assure you that in my view the former is infinitely preferable - and I am in good health. I do not believe Pharma companies are at times corrupt. I believe it is a baked in part of their business model. .
That’s not argued for warfarin. What is argued from what I read is that many people likely do not keep within the stroke-prevention ranges; that many foods affect its effectiveness; and that many viral illnesses, not least covid, can play havoc with blood clotting.
Corrupt practices certainly weren’t “baked into” the five companies that I worked for - all large, respected, research based and excellent in many ways.
Mind you, I wouldn’t even back then have rushed to work for Pfizer or Abbott. Hence my sympathies with your sentiments.
Steve
Well it seems I am re starting my journey through the dark arts of AF once more and following a meeting with my ( new Cardiologist ) last Tuesday he is happy for me to continue my anticoagulant of choice ( Warfarin ) once I'd explained to him my reasoning in respect of side effects of Edoxaban, and when I told him I had no wish to play guessing games with the other 3 NOAC's.
It seems weird to me that all the arguments against Warfarin have significantly entered the discussion arena ONLY since NOAC's have entered the market place. Apart from that the short comings with Warfarin have always been known.
There has never been an issue for the frail and elderly having INR tests done at home, if they can't do it themselves then a family member/ a friend/ or even a community nurse from the INR clinic would be able to once they'd received appropriate instruction. If a patient gives an inrange reading then no sweat - its not as if it is done daily is it. Before I was switched to Edoxaban, I was on 10 weekly INR testsand have no doubt thats where I'll end up again once I've settled back into Warfarin consumption. The INR Stars software ensures INR readings provide to the healthcare practioner the data to enable them to forecast correct doseage and future test dates.
I have not found anything swollen; however, I do not seem to swell even with knocks or breaks?
Been on them 4 years and not had any issues at all, don’t bleed or bruise more than normal and no swelling.
I did have issues with Apixaban. I didn’t see the connection immediately but noted more pain in knees and feet. The pain was significantly reduced when I switched back , with Dr’s approval, to Xarelto (rivaroxaban).
Hope you find a solution!
Thank you Iris for your reply. Thank you to all those who replied. I started on riveroxaban before & after my first & second ablation & it seemed very good. That was 2017. About a year later I had an operation on my foot for a bunion & also my other toes had become crossed over. Looked delightful!!! Op was very successful but 8 weeks later when I was able to go back to driving I suddenly had a swollen knee on the same leg. 20 mins later my whole leg had doubled in size. Had to be ambulanced to A & E where I spent 5 days being tested. The outcome was that I must have banged my knee & I had haemorrhaged behind the kneecap. Riveroxaban was too strong for me they said. So…I started Edoxaban .I have a feeling that my cardiologist said I may get swollen ankles with Apixaban, but I’ll have to speak to him again about it, and my horrible ankles. Will keep you posted. Thank you again for your time.
If you are in France… tisane de fenouil or pissenlit! Good drainers. If you find a therapist who does “drainage lymphatic “, but it is temporary… as you discovered -exercise helps There is no “pump” for the lymphatic system, hence movement is what is most helpful
Also legs up on an incline, either up against the wall with a big towel or cushion under the hips or lie on the floor with your legs up on a couch or high ottoman bent at the knees and fully supported from the calf to the knee (right angles). Helps to drain the ankles.
Darn, hope you can find the edoxaban! Are you near a border? Switzerland sells it!
Best wishes!
All medications have potential side effects. Sorry to hear you’re one of the unlucky ones with Apixaban. We certainly are all different in how we react. I’m fine with Apixaban give or take slightly more sensitive gut, but I was fine on Edoxaban too.
What a difficult situation. It’s important to discuss your symptoms with GP/cardio team and be taken seriously. I do hope you find a satisfactory way ahead with a suitable anticoagulant.
Hi there Spirtfix, I have been taking Apixaban for six years and haven't noticed any adverse effects like swollen ankles but skin seems to bruise easily and bruises take longer to heal. Heartface.
That's the only side effect I get from apixaban too.
Hi Sportfix,
Thankyou for sharing your experience with me. I had an ellergic reaction with apixaban. I had a rash all over my body and was finding it difficult to breathe.
The hospital changed me to adoxaban. I was fine after that.
I have been on apixaban for over 7 years now and have not had a problem like that. I think you should see your GP about this. It happened to me just before I was diagnosed with Afib and put on any medication and the GP prescribed a "water" tablet. Started on furosemide and then another stronger one was think it was Butemide(?) something like that? I think I was probably on them for a few months before everything went back to normal and I no longer needed them.
After my first ablation, my kidney's failed so I went on a low-protein diet and have managed to get my eGFR (glomerular filtration rate) up to 47 despite being assured it would never get beyond the 30 range.
I also take apixiban and sometimes notice swollen ankles (my usual sign is puffy eyelids) but usually when I have eaten too much salt. Extra fluids can easily be control with diet, exercise and vitamins - look up "water retention remedies" and natural diuretics. I eat a lot of asparagus, celery, parsley and watermelon, among other foods.
well I’ve just been for an ultrasound scan on my knee. Very painful. Now I’m thinking is it the Apixaban
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