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Warfarin

HGates profile image
28 Replies

For all those who have been happily on warfarin for years with well-managed INR yet are still being badgered by their GP to change to a DOAC with stories of reduced bleeding risk, this study should set your mind at rest that there is no reason to change whatsoever. 5 years ago my father reluctantly agreed to change to Edoxaban after his GP pushed it, despite the fact his INR therapeutic range had always been very well-managed. He didn’t get on with it at all & has been back on warfarin for the past 3 years. Personally I think warfarin has been subjected to an out & out hit job by the powers that be since the DOACs emerged so it’s nice to see this study come out in its favour.

ahajournals.org/doi/10.1161...

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HGates
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28 Replies
BernardS profile image
BernardS

Not only do I recommend Warfarin but where possible self testing. This can be done at times more convenient to you plus you know your own body and can adjust your dose without reference to a generalised computerised list . Simply too high - reduce: too low - increase. My dose is 1.5 mg for INR of 2.5. My son's dose is 7mg. Individual adjustment is therefore preferable to a third party " guess ".

Icenae profile image
Icenae

warfarin is cheap so they are getting you to change to a NOAC as its so much easier to manage. I had far more problems on warfarin and have been very glad to make the change. I was on warfarin a out 12 years. Now on rivaroxaban noac about 8 years. The first Noac I tried didnt suit but mo probs with rivaroxaban.

BobD profile image
BobDVolunteer

After nearly twenty years on warfarin why would you want to swap especialy if you self test and have good conformity ?

meadfoot profile image
meadfoot

Stick to what is right forvyou and works well. Dont be bullied into changing if you dont want too. Stick to your guns its your health and your life.

babs1234 profile image
babs1234 in reply tomeadfoot

Could you tell me what his adverse side effects were please

HGates profile image
HGates in reply tobabs1234

Stomach problems & an autoimmune issue that included a bad rash & muscle/joint aches & pains. It is possible the timing of the latter was coincidental but I’m a believer in the adage that if you develop a new health issue shortly after starting a new medication, there is a strong likelihood the new medication is the cause!

ozziebob profile image
ozziebob

Thanks for Posting.

Most of the articles I read give lower stroke and major bleed risks for the DOACs over warfarin, so it's not a surprise to me that medics recommend DOACs for newly diagnosed AF. And, as one Reply mentioned, some DOACs might not suit some patients, but there is a choice available.

As for the trial mentioned, it was a particular cohort of "older AF patients living with frailty (age ≥75 years plus a Groningen Frailty Indicator (GFI) score ≥3)" and already taking warfarin. The results of the trial are very significant for this cohort, but cannot be generalised to a wider population.

But it also reminds me that I need to be much more aware of the possible distortion in results caused by the cohorts available/chosen for trials that show a strong comparative advantage of DOACs over warfarin.

Ppiman profile image
Ppiman

I have no feeling that there's been any "out and out hit job" by the NHS to switch away from warfarin, at least locally. The cost of the INR administered by visiting community nurses or the risk and difficulty of ageing patients travelling to GP surgeries is much more likely the reason for the pressure to switch, I should think. My now 90 year old friend has struggled valiantly to his surgery fortnightly for too many years (but recently, becoming more frail, now does have a community nurse visit - at cost to a stressed local NHS system).

He has never been asked to switch, and when I mention the possibility to him, he would be very reluctant as he feels comfortable with warfarin, and I can see that. He has had a bad year with INR, though, following covid-19 last Christmas. This truly sent his INR all over the place for many months, during some of which he had to add in heparin - at some risk, of course. Had he been on a DOAC that wouldn't have been needed.

Steve

HGates profile image
HGates in reply toPpiman

Yes obviously agree that if someone is unhappily on warfarin, struggling with keeping INR stable or with accessing clinical assessment then a change may be sensible - although sometimes for the very old, a visit from the community nurse is one of the few social interactions they have during the week so the task is providing far greater value than a simple INR check. My objection was mainly to GPs pushing elderly patients with none of those problems to change to a DOAC. Regarding my ‘hit job’ comment I’m referring to the fact that the average TTR of the warfarin control group in the DOAC trials was hardly optimum (eg 55% v Rivoroxaban) whereas a decent anticoagulation clinic should be able to achieve 60%+, ideally nearer 70%. If I was sceptical I might argue that inadequate warfarin TTR was needed to demonstrate non-inferiority of the DOACs… either way, many health journalists don’t seem to bother to read the small print & readily just echo the final results & thus warfarin grows a reputation of being ‘too difficult’ or ‘not as safe’ etc.

BenHall1 profile image
BenHall1 in reply toPpiman

Steve,

The last time I saw my GP for a face to face consultation was 1 April 2022 !! It is now a SOP for my surgery to not see anyone ...... it's all telephone. The only people who see a healthcare ( I dislike the word professional ) person are those who need to visit a nurse. Never see a GP. Read my latest response to HGates.

Ppiman profile image
Ppiman in reply toBenHall1

That’s shocking. Our practice has continued much as it always has using a triage system whereby I call the surgery, my GP then calls me back within an hour and then the doctor decides whether a visit to the surgery is needed. It works well although there’s always a pressure not to be seen face to face, I must admit

Steve

BenHall1 profile image
BenHall1 in reply toPpiman

Steve that's how ours used to be in the times immediately following the cessation of CoVid hostilities .... nowadays it seems liberties have been taken, probably by the local CCG's making directives to their surgeries. Since this nonesense started if I have had a likely contentious issue ( say with meds ) I email the GP .... she doesn't like it because it is then in an undeniable format on my file in their surgery !! Doesn't improve my care BUT it stands the surgery on end !

John

Ppiman profile image
Ppiman in reply toBenHall1

I'd do the same in the circumstances. Telephone consultations are surely leading to many important health issues being missed. The whole point of a GP is to diagnose health issues before they become important, or to notice their importance and to progress to a specialist. The chances of this happening by phone are much slimmer.

Steve

BenHall1 profile image
BenHall1 in reply toPpiman

Hi Steve,

That's my view too ...that's how I would view my relationship with my GP - well back in the olden days. In a way and unwittingly, I have contributed to my own problems ... in that although a 79 year old git I am still fit enough (except for my shoulder) to hold a bus drivers licence and still drive 30 hours a week driving double decker College Services. Keeps me occupied. The point is that 2 years ago I changed employer and my new one has its own company Dr who checks me out and clears me and signs me off ready for my annual licence renewal. Up until this point my GP always gave me the medical ( and charged me about £96 ) .... so when my GP gave me the medical I was always guaranteed a face to face with her annually. My employer would take a dim view of things if I refused to see the company Dr..

As you say, the concept of telephone appointments will at some point lead to health issues being missed, particularly if the patient isn't articulate, or digitally aware/competant, or even unable to handle modern telephone systems, particularly the massively long wait ..... 'you are now 11 th in the queue' .

Hey ho 😊😊

John

lynneangela profile image
lynneangela in reply toBenHall1

I totally agree, l feel reassured seeing the nurse for my INR blood tests. My GP practice is constantly on about changing to DOAC's by a phone call to me and my reply is!! l feel a lot safer on warfarin as at least l know my blood INR is ok and I shouldn't have another TIA or Lacuna stroke.

Thomas45 profile image
Thomas45 in reply toBenHall1

I last saw a nurse practitioner six weeks ago, because of breathing difficulties, (I am asthmatic as well as having permanent AF), and I saw a doctor a week later, as I needed further treatment. The day before my first appointment I filled in an online form. The next day I received a call from the medical centre with a suitable appointment time that morning.

Thomas45 profile image
Thomas45

I hate the word "elderly,". I was changed several years ago from Warfarin to Rivaroxaban, as my INR was not stable. The first Rivaroxaban tablet gave me pains throughout my body, fortunately not in my head, but everywhere else.I stopped taking them after 12 days, and saw a GP on the 13th day. 5 weeks later, after many blood tests, I was diagnosed as having Polymyalgia Rheumatica, an auto-immune disease, which I then had for nearly four years. I bought a Coaguchek INR test meter and went back to Warfarin. I soon had a stable INR.

I check my INR when requested by the arrhythmia nurse, by email. A new arrhythmia nurse asked me why I wasn't on a Doac and I told her of my experience of Rivaroxaban. Other Doacs might work differently but I'm happy with Warfarin which has been used medically for 70+ years.

in reply toThomas45

I am not on any anticoagulants and probably shouldn't comment at all, but I was reading all the comments from anticoagulated people here, and there is something that I have noticed - on new anticoagulants, people often report about having stomach issues when taking them. Is it possible that these anticoagulants really disturb food processing system in the body...? Another problem, much more reported about, is internal bleeding.

Interestingly, I have read in the material from some drug producer that they denote anticoagulants as "blood thinners", lol. Do not ask me for the link, but knowing about very precise form of denoting these medications as "anticoagulants", I could not skip over it, without noticing it...

BenHall1 profile image
BenHall1 in reply to

Hiya Nesko .... this is a misnomer ..... anticoagulants are not blood thinners. They do not thin blood !

This discussion has cropped up here over at least 14 years that I know of, many many times, even when Warfarin (Coumadin) was the only one in the market.

They are anticoagulants .... the end 😀

in reply toBenHall1

Hi, BenHal1l!I know and I agree!

Threecats profile image
Threecats

Your post is very timely, as the pharmacist at my mother’s surgery is trying to push mum, who , at 88, has been on Wafarin with stable INR for years, into switching to a DOAC.. There was a similar push earlier in the year. Mum is having none of it! Thank you for posting.

in reply toThreecats

Sadly, the doctors seem to have become sales agents for medications and from long time ago... I will withdraw what I have said when they start pushing new drugs, which have lower prices than the old drugs, lol!

BenHall1 profile image
BenHall1 in reply to

😂😂😂😂 ..... brilliant Nesko .... I'd never thought of them as Sales Agents .... perfect description of my GP.😆😆😆

BenHall1 profile image
BenHall1 in reply toThreecats

Hiya 3cats,

I replied to HGates on this just now - you may be interested in what I said.

BenHall1 profile image
BenHall1

Hi HGates

Thank you for your very interesting post and the link which covers pretty much my situation. In recent years my GP has also pushed for me to abandon Warfarin and switch to an NOAC. Each time I have refused on the grounds that ... “if it ain’t broke don’t fix it”.

Frankly I agree with you ... Warfarin HAS, BEYOND DOUBT been the victim of a massive hit job. Led by my experiences with my surgery down here at the pointy end of Cornwall I have formed the view that the Dept of Health has issued a directive to all UK Clinical Commissioning Groups (CCG’s) to ensure Surgeries under their control shift people off Warfarin to these NOAC’s.

In recent years osteoarthritis has progressively messed up both shoulders. My GP had an Xray done of my right ( which at the time was the worst ) and based on the Xray gave me a cortisone injection ... I expected only a few months of pain relief but now 21 months later ... no problem. Brill.

Now the left shoulder has kicked off made worse by my tripping up over our cat and hurling my osteoarthritic left shoulder into a door jamb ! After this unfortunate hit I phoned 111 and got an appointment at my minor injury unit the next morning, Xray taken, nothing broken. I have requested my GP to repeat the jab ... she has declined. She keeps referring me to Surgery Physio who just gives me exercises which just generate more pain. My GP has prescribed Amitriptyline. All that did was give me diahorrea. She then prescribed Gabapentin ... same result, Diahorrea ! I have refused any more experimentation and just reverted to my old standby CoCodomol 30/500 for pain relief.

Now I need to say that when she put me on Gabapentin she said that of all the current NOAC’s this would go well with Edoxaban as it would minimise the bleed risk ( when compared to Warfarin ). Frankly in normal circumstances I would have argued the hind legs of a donkey ( as I’ve done before with her ) BUT my pain levels were so high and consistently 24/7 that I agreed - I would have agreed to jumping off a cliff TBH. So, underduress, I agreed to Edoxaban. It isn’t bad but is giving me a feeling of light headedness. No dizziness, just light headed. My plan is to now return to Warfarin as I still have my self testing device and ‘in date’ test strips which I get on prescription.

So now, all these weeks later it has been decided I should have an Ultrasound on the left shoulder but the only place is a Private hospital in Plymouth some 70 miles from where I live. ( I am willing to pay for the Ultrasound myself ). Still in pain. Meanwhile, I have now decided to contact my local/nearest Private hospital and I’m now on their waiting list for an Ultrasound, estimated to be a wait of 4 to 6 weeks. I haven’t even heard from the Private Plymouth Hospital.

May I enquire as to what side effects your father experienced with Edoxaban ? Also, what problems did he have ( if any ) with changing back from Edoxaban to Warfarin ?

Although my pain is becoming more manageable now I still cannot return to work for another few weeks so I have decided to use my time and launch a massive complaint about the way surgeries now operate in this Post CoVid setting. One thing is for sure there is no such thing as a health SERVICE anymore.

No doubt at all there was a Pre CoVid NHS and a Post CoVid NHS, the latter being an obvious secret agenda to dismantle what we knew in bygone years. A plague on their [politicial] house.

John

HGates profile image
HGates in reply toBenHall1

John, this is dreadful to read. I feel for you being in such pain. My father has also had a rough ride with chronic pain over the past 4/5 years & would you believe the last time he saw his GP face-to-face was 2019! I tried to get him an appointment in 2020 when his skin rash had become so bad his face was red raw & peeling off, his lower legs were swollen & cracking & his muscles & joints were steadily deteriorating to the point that just moving around the house was difficult. Back then the only game in town was Covid so all they could offer was a phone consultation & say ‘keep applying the ointment’ so my remaining option was to book him an appointment privately with a Dermatologist. It was only then then things started to happen. The Dermatologist referred him to a Rheumatologist & he was diagnosed with a ‘lupus-like’ autoimmune condition. He has had a wide variety of treatment over the past couple of years. He is still in pain & his skin is still troublesome but he is considerably better than he was. He gets his INR checked every 2 - 4 weeks by the nurse at the local surgery & an occasional blood pressure check but his yearly ‘GP check-up’ is always just a call from the pharmacist to check he’s still taking all the medications he has accumulated prescriptions for over the years. In fact he’s on so many pills he avoids taking pain killers as can’t face having to swallow any more! Re his side-effects from Edoxaban, it was chiefly stomach ache although the fact the rash developed shortly after starting it led me to make the accusation & the Dermatologist, saying it was possible, did put him back on Warfarin. The Rheumatologist insisted it was unrelated so who knows? The trouble with a multitude of pills taken at the same time is nobody knows what the interactions will be, particularly when taken long term. He had no issues changing from Edoxaban back to Warfarin. I do hope that you eventually get the treatment you need & that the pain doesn’t get you down too much. There is something very wrong with many GP surgeries at the moment & they seem to be going out of their way to avoid seeing people. Much as there are still some really good doctors & nurses in the NHS, the whole system has been so clearly mismanaged & it is causing untold amounts of unnecessary suffering. The question is how much is incompetence & how much is deliberate….

BenHall1 profile image
BenHall1 in reply toHGates

Gosh, reading your further comments .... maybe I'd better shut up and quit moaning. Your poor father has had to endure so very much more than I have. I feel a bit guilty about moaning now especially as I know that when the pain is dealt with I can go back to work part time bus driving - although - I suspect I'm going to have to front and centre report to our Company Doctor first.

I always look forward to my annual review, which is a review of all my medication, blood pressure and the stability of my INR. In the good old Pre CoVid days this review was always conducted by my GP. Nowadays its relegated to one of the senior nurses in the surgery who plays a game of questions and answers as to how I am still responding to the range of meds I'm on. I can't help but notice now my GP often refers me to the Surgery Pharmacist for queries on meds issues. My surgery also has an assistant Pharmacist. Talking about 'empire building' !!

Thanks again for all your comments ... I hope others have found it also of interest. Yesterday early evening I emailled my GP with an up date on the impact of her decisions on dealing with my pain. She won't reply, never has done, but equally she won't like it because it then becomes a file document in the surgery 'system'.

I wish your Father well and hope that what improvements he has experienced continue well into the future.

Best wishes.

John

HGates profile image
HGates

Thanks John & good luck with the company doctor!

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