Returning to Warfarin after 4 months on Edoxaban ...... part 2

[BenHall1]

I posted on here my original comments on this subject. Hopefully, this update, will be of interest.

I made the decision to quit Edoxaban on 6 April. I didn't /couldn't be bothered to make contact with my GP, whenever I phone up for a chat I'm asked to make an appointment which usually is about 10 days away - as much use as a chocolate fireguard ! So I just went solo, using NHS website for quitting Edoxaban as my guidebook.

Cut my 60mg Edoxaban in half took 30mg on Saturday evening plus 2mg of Warfarin, repeated this again on Sunday evening. Then continued with 5 mg Warfarin only, daily in the evening until I reached the start of my target range INR of 2.0. My Target INR range is 2.0 to 3.0 with the precise target being 2.5.

Here is how my INR behaved ...... 6/4 = 1.3; 7/4 = 1.1; 8/4 = 1.2; 9/4 = 1.3; 10/4 = 1.7; 11/4 = 1.9; 12/4 = 2.0; 13/4 = 2.4 .............. sorted! ( hope all that comes out when I press POST.

I documented all this and took it along with my notes to my Surgery on 10 April where I had to attend for full range blood tests. So, sometimes ya get lucky, the duty nurse also happened to be my Senior INR Nurse from the previous 12 years when I took Warfarin ........... so we had a good old chat, particularly concerning how my GP would accept my high handed action 🙂 Meanwhile she said she would resurect my previous Warfarin files and set everything up and we'd do a blood test again next Tuesday for a further check on how my INR is going. Meanwhile the INR nurse phoned me yesterday and told me my GP has now agreed to sign off on all future repeat prescriptions. Sorted!

As many of you know I'm not really a great fan of the NHS ... especially at GP level - useless - but I must say my INR nurse is brill. She checked with me that I had the NHS App on my phone to which I said yes ...... she then went on to tell me unlike the olden days I could have my blood test results through on the App by Friday ............. sure enough that's exactly what happened. I was both amazed and impressed by this speedy response. Being a bit of a statistics freako I was really, really impressed by the different layers of the presentation of the blood test results. Great. Blood test results were all uniformly normal ( phew ! ). This is also comforting as it suggests that my decision to quit Edoxaban was the correct one, confirmed also by a massive reduction of nightmares/ horrormares and an improvement with my outta control tiredness.

John

[Cavalierrubie]

Good to hear you are feeling better Ben. It must have been stressful transitioning from Edoxaban back to Warfarin. I wouldn’t have had the courage to do that myself, owing to bleeding side effects if l got it wrong, so good you had your INR nurse to watch over you. It is obvious it was something that needed to be done as you are feeling much better. As l said previously, we know our own bodies and how we feel, and sometimes we can tell a GP what is wrong and what should be done. It’s getting them to listen! Well done you. 😊

[BenHall1 in reply to Cavalierrubie]

Thank you Cavalierrubie, I have done it quite a bit in the past when I've had surgical procedures . BUT .. even so, there is always a sense of trepidation, or perhaps self doubt. I must say though I'd never attempt it if I had to wait for an appointment with my INR Nurse or my GP for their supervision. The fact that I have my own testing device and a supply of test strips and lancets makes it just so, so, so much easier.

Onwards and upwards 😂😂

John

[2learn]

Hi, I'm never sure why the NHS is so agst warfarin or is it just drug company driven. When on Warfarin I found INR staff very helpful, you were regularly monitored and guided through any hospital and dental procedures. I was put on apixaban 12/21 after heart op, but you get no check ups etc, and my arthritis is much worse but GP just says its old age take painkillers. I had a stroke on apixaban and so they say its better to stay on it rather than warfarin. Good luck with yours.

[BenHall1 in reply to 2learn]

Hi,

My own personal view, based on my experiences with my current surgery is that it's driven by Big Pharma, the drug company kingdoms.

Anyway, I've got what I want. My INR Nurse phoned me last Friday to say that my GP has agreed and will sign off on my repeat prescriptions. However, acting on instructions from my GP she warned me that if was ever hospitalised they would take me off Warfarin regardless and put me on one of these NOAC's. So now I know how the NHS will operate and having that insight gives me some opportunities to prepare my future position.

Of course there are two ways of being admitted to hospital, one for elective surgery ( where things can be planned ) and the other emergency surgery ( as a result of say, a motor traffic accident ) - either way if you are on an an anticoagulant you will still need a reversal agent. I have had 4 surgical procedures while on Warfarin where I've had to stop and restart and I just cannot see what the issues are ... and one of those was a knee replacement job. I still feel I am the victim of a clumsy surgery driven attempt to give me the frighteners.

I have already had to make a formal complaint to my MP in Westminster about my local hospital which went to Secretary of State level and I know this particular hospital were well chastised. Wouldn't hesitate to repeat the ugly, time consuming process.

The other fact of life of course that not all anticoagulants, Warfarin and the NOAC's suit every patient, and so its very much 'horses for courses' ! Another fact the needs stating is that ( thinking of a very good family friend ) some cardiac surgery like heart valves - the patient can only take Warfarin - post op.

I do really wish you well on Apixaban - who am I to argue with healthcare professionals ( so called ) - but it wouldn't be the route that I would choose.

John

[Cavalierrubie]

Thanks for that info. Ben. The hospital would not be able to stop my Warfarin and put me on the new anticoagulants because l cannot tolerate them and get very sick. I would refuse to take them for that reason, so what would they do? The greed of big pharma just gets worse and putting patients at risk. I was told from the horses mouth that Warfarin reversal is easier to deal with. I cannot envisage how they will ever eliminate Warfarin completely as it’s still needed for certain heart patients. Everything is a battle and one has to be very much aware of what is going on in the NHS to make sure you are safe. Frightening, to say the least.

[ozziebob]

Perhaps the hospital medical staff are influenced by the plethora of research that shows stroke and major bleed risks are lower with DOACs than warfarin, and consequently their guidelines are simply in line with this latest research.

However, with awareness of possible bias in big Pharma funded research and control of medications, we individually still need to assess such comparative research results with appropriate caution.

[BenHall1 in reply to ozziebob]

yer pays yer money, yer takes yer chance ... research is a form of guidance. Nothing replaces what I know about how my body responds to Warfarin. Its not about risks and bleeds etc its about overall well being and my ability to live a life. Edoxaban took all that away from me. I don't need research to tell me what my body is telling me. My GP has at last realised this. She is young ! She is a slow learner. As I see it research like this doesn't consider the impact of drugs with other drugs. If I have to go for elective surgery I take my own INR equipment and sort myself.

[ozziebob in reply to BenHall1]

Yes, I'm aware of your situation re edoxaban and warfarin.

I wasn't denigrating the affects of drugs on individual patients as a decisive factor in individual choices, rather the opposite.

I was simply highlighting the reasons why medics and hospitals have their guidelines and protocols, as well as the related dangers of relying on some of the big Pharma sponsored research.

Good luck with your switch. As for me, I'm too "frit" to even start anticoagulation (see my Bio).

[BenHall1 in reply to ozziebob]

Many thanks for the clarification. I have an early start in the morning but I will go over your bio tomorrow.

[Brianboru]

It’s great reading other people’s views and actions. One of my 6 meds. is Edoxaban and the collective side effects have been a curse on my life. I am currently programming when I take the 6 depending on either being home all day or out on some mission and avoiding a degree of inconvenience.

I am also deliberately missing one or two on certain days to monitor any improvement or not. Still here after listening to my body ,so far ! Compiling a record of observations to both help me and the cardiolologist to help form future opinions.

[BenHall1 in reply to Brianboru]

Hi,

I have often commented on this forum that all that's happened since the advent of NOAC's is that the GP fraternity have unreasonably pushed/promoted them. Given that many folk cannot handle Warfarin ( for whatever reason ) this is not unreasonable. What is unreasonable is to switch anyone successfully handling Warfarin to some other anticoagulant.

In a past life on a galaxy far away I have held senior management positions and much of my decision making has been based on data provided by statistics. It is a feature of my life now and I have a shedload of stats embracing blood pressure, heart rate, INR's, even blood sugar going back 12/13 years. In the event of a conflict with my GP I produce these facts .... because they are ME ! On those occasions I have been in hospital for surgery I again present the relevant data for surgeons and anesthetists - this has always been welcomed. I always seem to get resistance from the GP world.

My view is - keep recording all your observations. One day you may need to rely on them.

[Brianboru in reply to BenHall1]

Thank you Ben !

[Budken]

Honestly I do not understand why anyone would want to go back to Warfarin ( RAT POISON) it is a dangerous drug, which is why you must have your blood monitored constantly when on it. It also has interactions with many foods. I for one would never consider taking it at all! I am currently taking Edoxoban myself, and have had no problems with it at all. It would be nice if you explained, just why you wanted to switch back to a dangerous drug, from one that is much safer. Edoxoban is out of your system in 24 hours.

[BenHall1]

1] My GP had been pressuring me for a year or so to come off Warfarin and I have refused. In the end I agreed to try it and see .......... the result of this trial over this period of time was increasing nights of disturbed and broken sleep due to the most vile nightmares which I blamed on Edoxaban. I then made a formal written complaint to my GP who agreed that I should return to Warfarin. I also made it clear that based on my experience with Edoxaban I would not consider any of the other three NOAC's. At the time I was a double decker bus driver and as such had a number of legal responsibilites, one of which is to look after my health to ensure I do not fall asleep at the wheel.

2] My sleep issues as outlined have now disappeared that I am returned to Warfarin.

3] I have my blood monitored regularly to ensure that my blood lies within a theraputic range. Its called an INR blood test. The process is identical to that which a diabetic undertakes in establishing his/her blood sugar level. Nothing to do with Warfarin being deemed by you or anyone else to be a dangerous drug. In my case my approved INR score lies in the range 2.0 to 3.0. Other peeps with other cardiac issues may well have a different INR range.

4] There are training processes in place by all healthcare institutions to ensure that people taking Warfarin eat and drink the correct foods and follow the appropriate diet ... although for me foods and drinks, alcoholic and non alcoholic are not a problem. Such institutions approve of INR tests being carried out by a Surgery or as in my case privately at home with my own device - again similar - but larger - than a diabetics device - working with my INR support team at my Surgery. I have also spent a great deal of time learning about Warfarin and how it works and so I can hold my own in any discussion on it with my GP and/or my INR clinic nurse.

5] Perhaps you could explain here why Warfarin is a dangerous drug, sounds to me you are indulging in scarmongering and emotional claptrap ! The last thing this forum needs. Then I can refer your comments to NICE for an authoratitive comment on your allegations of Warfarin being a dangerous drug. I am surprised HU AF Admin approved your post when you use such alarmist terminology. I've taken a screenshot of your 'dangerous drug' comments to illustrate the issues I have with your alarmist views ( my own response too ).