changing from Warfarin

[nemisis2]

Hi, My doctor has suggested I change from warfarin which I have been on for AF for four years, to rivoxaban, I am not sure if I want to do this, any comments please, how long does it take to get warfarin out of my system, I am told not to take any for four days and then start the new drug but I am concerned about not taking anything for four days, Pauline

[jeanjeannie50]

Do you know why he wants you to change anticoagulants? I opted to stay on warfarin and now have my own INR testing machine. I'm old fashioned and like to stick with what's been tried and tested for many years.

[nemisis2 in reply to jeanjeannie50]

Hi Jeanne, Thanks for your reply. I really don't know why my doctor wants me to change, the only reason he seemed to give was that the hospital where I sent my result to may be stopping soon, I self test at home with my own machine. I have mixed feelings about this having been on warfarin for four years. It would be nice to eat all the lovely veg that I miss but although I have a new prescription to use I am still wondering what to do, and hope I get some other replies from people that have changed, Keep well x

[tunybgur in reply to nemisis2]

You don't need to stop eating greens if you're on warfarin, just so long as you have your warfarin adjusted to suit your diet.

I eat lots of fresh green veg and vit k rich foods and my warfarin dosage (5mg) keeps me midway between 2 and 3.

The important thing is to keep roughly the same diet and not suddenly start eating lots of sprouts or kale.....can't live without fresh crunchy sprouts!

[BobD Volunteer]

I have been on warfarin for sixteen years now with zero difficulties and never make any allowance for diet. I eat what I want when I want. My INR is mostly (better then 85%) in range and the only times it has gone out has been due to the local clinic adjusting my dose. ( I ignore them now. )

I can see no earthly reason to change BUT if your INR is unstable then you may be better off on one of the newer anticoagulants although we do see a lot of people here who seem to have massive side effect problems with most of them.

[nemisis2 in reply to BobD]

Hi , I find all this very confusing more so it is almost impossible to talk to a doctor at present. About two weeks ago I got a call from my doctor asking if I would like to change from Warfarin but it was up to me and if I said no that was fine, I did say no and thought that was it. A few days later I got a call from the surgery from a Pharmacist who said he was working with the doctor and wanted to explain about Rivaoxaban. I t old him that I had already spoken with the doctor but he said he had talked with her and she felt it best that I change, the reason given was that the hospital I sent my INR results to was not going to be doing it much longer. I have my own machine and test regularly and am fairly stable, usually between 2.3-2.7. He seemed to dismiss this and told me that a prescription would be sent to my chemist and I should start taking the new drug on Saturday, and stop taking my warfarin on Tuesday which was yesterday. He told me not to take my INR but of course I have done. I really feel very confused about this and your thoughts would help. Thanks, Pauline

[vagueinpurple in reply to BobD]

Hello , I am curious about the side effects you see to the newer anticoags, as a year ago when I was on riveroxiban I developed hair loss..not full on alopecia but just an unusual shedding. I stopped after 3 months and hair loss returned to more normal though I think it is listed as possible with flecainide also. There are articles about it, though GP hadnt heard of it, but cardiologist did not argue...smile.

[BobD Volunteer in reply to vagueinpurple]

Hair loss and brittle nails have both been attributed to warfarin as well so no surprise there. To be honest I think if you read all the posts on HUL you will find just about every side effect complained about by somebody . The cynic in me thinks this is because people read the side effects on the sheet that comes with the drug which is something I never do..

[Hidden]

Hi Pauline,

Totally agree with what jeanjeannie and BobD have said, particularly BobD's second paragraph.

Personally, I would push this to the limits ............ just refuse to switch, unless there is a sound medical/scientific reason to do so. It seems from what you say this is not the case and that for whatever reason there is some collusion between hospital, pharmacist and GP and that nobody can be bothered to make alternative arrangements to the testing facility.

I would also make it clear that if the hospital isn't doing these tests any more then you expect them to make alternative arrangements.

If you were particularly stressed by it all then search your local area for a new GP Practice and Pharmacist and switch. Make sure that if they continue putting pressure on you then you'll have no option but to make a formal complaint. to your local CCG and your MP ...... again something I did with great results. It did take time though

As I said, in the past I have had to do both and with great success. My current GP practice is brilliant with INR testing and has its own clinic.

I have been on Warfarin since January 2010 and self testing since April 2010 with absolutely no issues at all, with either, Warfarin, INR self testing or my INR clinic.

I also endorse what BobD says about eating and diet ......... and I still drink my drops of beer and red wine or G & T as I please. In terms of eating I am exactly the same as Bob.

Good luck,

John

[DevonHubby1 in reply to Hidden]

Whilst I agree you should not be forced to change, all this extra Covid testing capacity has not appeared from nowhere. The stats show a significant amount done in hospital and will need to continue for some time. Try to see it from the hospitals point of view, if they can encourage people onto more modern meds where you just have a blood test once a year then that will help them protect us all by doing more Covid testing.

I hope this is just poor communications from the GPs and that whilst they would like to scale back INR testing they would not resort to withdrawing it completely.

[Auriculaire in reply to DevonHubby1]

If someone is stable on Warfarin and not experiencing any side ettects then it is unethical to pressure them into taking a different drug that might give them side effects. Particularly so when these are drugs which have to be taken for life and the new drug has no long term safety guarantees. Nobody on earth had been on a NOAC longer than 10 years ( Pradaxa was introduced in 2010) whereas Warfarin has been used for nearly 70 years. Covid should have no bearing on this at all.

[DevonHubby1 in reply to Auriculaire]

I agree no one should be pressured but we are now in the 'new normal'. COVID is real and we are a year away from a vaccination. Please be open to new ways of doing things, if it's not for you then fine stick to what you are comfortable BUT dont attack our wonderful NHS for trying to find alternatives. I find it sad that accusations of 'not bothered' and 'cost cutting' have been so easily used by people on this forum as the explanation for the NHS's drive to cope with this pandemic.

2 weeks since the clapping stopped...how quickly people forget!

[Auriculaire in reply to DevonHubby1]

There is no guarantee of a safe vaccine within a year. After 18 years they still could not come up with a vaccine for the first SARS. New ways of doing things should not include pressurising people to change drugs if they are stable and happy with what they are on. It is unethical . Especially if a person is self testing on Warfarin. They are not having to go to be regularly tested at a surgery. The NHS is far from wonderful due to having been starved of resources for the last 10 years. It does it's best and the personnel are dedicated and their dedication is exploited. The reports of health care workers being pressured not to speak out about lack of appropriate PPE by managers show that there is a lot wrong with the way it is run.

[Hidden in reply to DevonHubby1]

That's the whole point in self testing for an INR value, 2.4 or 2.7 whatever. It's done at home or wherever - all the patient does is phone the result in get a new dosage and new test date. Any surgery with the Roche software on their surgery IT system would be able to do this. Not rocket science.

If on the other hand testing were done in surgery and blood sent away for analysis that's different.

[Hidden in reply to DevonHubby1]

The whole point of INR self testing is that it can be done anywhere in the world and the last thing it needs is a hospital or laboratory to test the blood. A finger prick of blood dropped onto a test strip which is in a device will do the job !

All it needs is for the GP to have in the surgery computer network the Roche Coaguchek Software and it will provide the next round of dosage and the next test date. Minor staff retraining in the surgery may be necessary.

I can't see an issue here ............. other than an anti warfarin campaign pushed by the manufacturers of all the NOACs. Warfarin is the cheapest A/c drug. In the same way that this new cornoavirus drug announced this week (dexamethasone) is the cheapest available for the job it will do. And like Warfarin it is an old drug. Drug companies don't like old drugs competing with new drugs .......... it affects their bottom line !

No surprise there then !

John

[opal11uk]

I was on Warfarin for 16 years and changed to Predaxa, no problems and oh the joys of no longer chasing my fingers around to stab them lol, testing now once a year.

[Salvatore68 in reply to opal11uk]

What are you testing once a year??

[opal11uk in reply to Salvatore68]

There is no requirement, as with Warfarin, to regularly blood test you just have a blood test once a year and thats it.

[Angie06]

Hi, my mum was on warfarin for 10yrs and had to change to Apixaban a year ago due to her veins becoming difficult to get blood from (she's 91) . There have been no side effects that she's noticed and loves not having the district nurse trying to get blood every couple of months.

[Hidden]

I've been on Riveroxiban for 2 years with no problems

[RoyM]

I have been on Apixiban for over 5 years with no issues what so ever. Once yearly blood test.

[Salvatore68 in reply to RoyM]

What is being tested once a year

[RoyM in reply to Salvatore68]

They test for kidney and liver function

[Hidden in reply to RoyM]

I am tested once a year, standard practice. Not because purely of warfarin, but the range of other drugs I am on too.

[Wightbaby]

I had to change to edoxaban because of COVID and my surgery no longer wanting to do INR checks. I had no say in the matter! Would have preferred to stay with something that had been OK for last 7 years though!.

[Treffynnon]

I agree with the others here - it's your choice, keep the pressure on. The driver for the change is almost certainly economic. With the ever increasing number of people presenting with AF and therefore needing anti-coagulants the number of INR tests needed also increases and this means more staff and facilities to do the testing, all very expensive. Switching patients to a NOAC eliminates all of the above pressure, the individual dose costs more than Warfarin but the ancillary costs all but vanish.

I've been on Rivaroxaban for 12 months with no perceived side effects.

Steve

[R1100S1]

Rivaroxiban for a few years now with no problems I am aware of.

Found warfarin a bind with testing etc.

[mullikg in reply to R1100S1]

I changed from warfarin to Edoxoban at my GP,s suggestion about 2 months ago. I live 8 miles from the surgery and the only side effect is that it has eliminated 240miles per annum of travel. I had been on Warfarin for 18 years and was very wary about the change because I could not figure out how they could tell what state the blood was unless your body adversely reacted to it. I believe the underlying reason for all of these GP,s suddenly recommending this change has more to do with saving time and money which is very important in this present situation.

[MarkS]

I think the reason is convenience to the practice. They can just give you pills and forget about you. It is not cost if you use your own Coaguchek. Then you only need testing twice a year which is the same as for the DOACs, Cost p.a. for warfarin about £100, cost for DOACs around £600 p.a.

It seems incredibly hard to speak to a doctor now, even by phone. You would have thought with the surgeries shut and only virtual appointments, it would be easier. I think they've spent too much time with their feet up!

How much of the time have you been in range (presumably 2-3)?

[Hidden]

Obviously if you are happy to continue taking Warfarin then you should but the irony is that it wasn’t that long ago that people were complaining because GP’s were resisting patients attempts to change to a NOAC, now DOAC anticoagulant. I rarely take issue with anything BobD says but I’m not sure that I can recall reading about “massive side effects with most of them”. We sometimes hear of digestion issues with Rivaroxaban but that is often due to it not being taken with a proper meal. We have also heard of some people saying they can cause hair loss and brittle nails but the same is often said about Warfarin. I have taken Apixaban for probably 5 years with no problems and for me, the freedom from worrying about INR was important due to extensive travelling (pre Covid-19). Not everyone enjoys stable INR. Many express concern about not knowing whether the newer drugs work or not but the same can be said about most medications. Also, some are concerned about any long term effects that taking a relatively new drug may bring and I agree that these are issues which need to be considered.

[Betablock]

I had loads of problems when I was on Warfarin.

I switched to Apixaban 5 years ago and I've had no problems since.

[Lizty]

I have been on Riveroxaban for three years now with no problems at all. However, I have had to go to the hospital for blood tests recently for another matter and it seems that the vein that they have always used to extract blood from is not as effective any more. Too many blood tests maybe!

[123Abc123]

I had to wait for two days for the Warfarin to leave my body and I was worried too but being on the new drugs means you don’t need to worry about what you eat.

[Drounding]

I've only been on anticoagulants for a few years now and going onto Warfarin was never even discussed, and I certanly wouldn't have wanted to use it anyway. Initially I was on Dabigatran but changed to Edoxaban which I much prefer. One a day tablet, no testing, job done.

I can understand though that for people who have been on Wararin for many years they may not wish to change. The push for people to change I presume is driven by the costs of testing and people's ability to keep their INR stable and in the range all the time.

Personal choice at the end of the day.

[Nan1]

Hello, your message came through today and I am in just your position in that I am changing over to Apixiban from Warfarin and take my first tablet tonight. I had to change as I couldn’t stay in range. I am extremely anxious about taking that first tablet as I was with Warfarin and just hope I don’t have any horrible side effects that Bob mentioned. Fingers crossed all will be well and I wish the same for you. Take care

[nemisis2 in reply to Nan1]

Hi Nan1, Thanks for coming back to me, I had stopped my warfarin for two days but got so stressed about it that I started taking it again. I do my own test and it had dropped so much in the two days that I just couldn't cope with another three days. I was told by the pharmacist that I had to leave off warfarin for four to five days before taking the new drug. I am still very undecided about what to do and am trying to contact my doctor to chat with her but that is not easy at the moment. I would love to hear how you get on with taking your new pills, take care, Pauline

[Nan1 in reply to nemisis2]

I will happily let you know how it’s going. I have to book a blood test for three months time to check that my liver and kidneys are coping with the new drug. Will be anxious but have to remember that I have several friends on it with no problems so take heart from that. My GP thought on balance I should be on one of the new ones.

[Buffafly]

If you do agree I would ask for Apixaban instead. There seem to be less issues with it though you have to take twice a day.

[TheProf]

I can't imagine being on warfarin now that the newer drugs are available. I take apixaban which seems to work fine - I find that small cuts bleed longer but that is all- The action is different to warfarin as it works on a different clotting agent. No testing to do - much easier for patients.

[hypomans]

been on Rivaroxaban for 3 years no side effects at all.Also on 7.5mg of Bisopralol with no side effects that i can detect. No messing around getting tested like with Warfarin aint modern medicine wonderful.

[JaneChapple]

Hi Nemisis

I would ignore what pharmacist says and fight this completely! First of all if you have your own testing machine there is no need for them to send the result to the hospital!. The nurse/doctor should just check the result with the last one and put the result on your record?! May be the pharmacist thinks you are doing the test in the surgery? The INR results used to go to the hospital many years ago, but not now as far as I am aware, unless yours still does. I would go back to doctor and explain that she had told you it was up to you about what you wanted to do and now this pharmacist is interfering. Its none of their business and something odd is going on here and I would find another pharmacist pronto!

They tried to get my hubby onto one of these new drugs but he refused. The doc kept phoning because he didnt want to visit the surgery during COVID-19 crisis so in the end he got a second hand machine from a kind person on this site. She is perfectly happy now and he just does a check every six weeks or so and sends result via email. She then tells the admin staff when he should do the next test. Simple and no interference from chemist either! A note of warning she did mention previous to this that they may have to refuse his warfarin script if he did not get tested regularly(wasnt happy about this), but all is well now. Just make sure they dont take your script away and put a new one on for Rivaroxaban without even phoning you! If you cant get doc to phone ask for email address you can write to or send in a strong letter of complaint saying you wish to remain on Warfarin and under no circumstances do you want your medication changed over without your permission and with no proper discussion with you.

Personally I would not come off Warfarin at all. I hope you have enough until you can sort this matter out. If they wont help or you get no response contact PALs/CCG (local Community Commissioning Group. tp help). You can also ask for a free copy of your medical records to see what conversations actually took place between your doctor and pharmacist, as long as they dont take those pages out of course!

Another thought may be the pharmacist just said that and your doctor hasnt spoken to them at all?! Unfortunately pharmacists have been given extra powers now to deal with things like patient drugs and even illnesses such as heart problems which I believe is totally wrong and outside their remit, so they can cencel a script at the drop of a hat. I think the GP surgeries are fairly quiet at the moment so no reason why the doc cant speak to you either!

Good luck!

[nemisis2 in reply to JaneChapple]

Hi Jane, Thanks for your reply, I am hoping to talk to my doctor tomorrow, I have been told to call early in the morning so fingers crossed that she will speak with me. I really don't understand why after talking to my doctor and her telling me it was fine to stay on Warfarin, the pharmacist called, he said he was working with the doctor at the surgery and I got the impression that this was something they were doing with lots of patients. Thanks, Pauline

[JaneChapple]

Hi Nemisis2 dont stand for amy nomsense! This sounds like they are trying to get everyone off Warfarin so they dont have to go to surgery for INR test! Its a form of bullying and shouldnt be allowed. When COVID-19 arrived in Isle of Wight all patients were taken off Warfarin. I dont know if they were given a NOAC or not or in fact given any choice/warning! They are supposed to work with patients, not against them and certainly no bullying or threats should be involved. They can be reported to the GMC for these sort of actions. I would certainly write in if you dont get any satisfaction and make sure it is in your notes,that you want to remain on warfarin. For some of these drugs there is still no antidote if you bleed.

I have heard of several stories recently where pharmacists have interfered in patients treatment or told them what drugs they can or cant have (even when doc has said they can have them) which is unethical.

I completely understand the difficulties with the COVID-19 situation as I have retired early recently from NHS (hospital) myself and have been self-isolating for nearly 3 months with my family and have only gone out for a walk.

I also agree that a fantastic job has and is being done re COVID-19 in very serious and difficult circumstances. but I dont agree that Pharmacists should be talking to doctors without consulting with the patient and involving them in their care right from the beginning, and being completely open and honest with what they are trying to do. As already mentioned here it is just not ethical. I am also aware that doctors have not been doing much lately as many appointments have been cancelled too, so it wont hurt them to phone patients. I n fact our own doctor has phoned us several times lately regarding our health and has been very helpful.

Good,luck and let me know how it goes!

JaneCx😎

[Challiefan]

I really can't believe I'm reading some of the replies above. 'Doctors putting their feet up!' Yeah sure, like they don't give a damn. Comments like that are frankly offensive.

If you don't want to take advice from the experts, that's up to you. It's your choice, good luck with it.

For what it's worth I've been on Rivaroxaban for a few years now with absolutely no problem, and no hassle of being tested every two seconds at all.

[Nannie-C]

A lot of practices here in Scotland have their own pharmacist to help them monitor and educate on all prescriptions. That has been the case for anearly 20 years, they have various roles within the practice but should not be used to badger you into changing a drug you’ve already told the Dr you’re not doing. I’m self isolated for over 12 weeks and only people who’ve been in our house are two different nurses in full PPE to check my inr (I’m disabled and need home visits). We have several warfarin clinics around this health board who deal with all aspects of your warfarin journey. Some changes in rotes are the only changes they’ve had with covid, Happy to remain on warfarin.

[daysyday1]

I had been on warfarin more than 10 years then after a bad Afib attack necessitating a hospital admission, the cardiologist asked why I was still taking warfarin and not the newer drugs. I said because it had not been mentioned to me. I had talked to the warfarin nurse about changing over but she wasn't keen as it is not monitorable. The consultant asked if I wanted to try it and obviously, I said yes. I started it that evening instead of the warfarin. I have had no problem with it at all, less bruising has been noticeable though. No side effects I've noticed. However, my sister was put on it after a DVT and it made her really poorly, but she does have a lot of drug allergies. So whilst it may suit many, it doesn't suit everyone. I wouldn't go back to warfarin and blood tests now. It has freed up more time for me.