Hello Everbody
I have permanent AF and had a call from my GP surgery yesterday to say all their patients are being taken off Warfarin asap. This is in order to stop INR checking and risks involved in current situation. My new DOAC will be Epoxaban. She said miss one dose, then start the new one.
Anyone else had "the call"?
I find it a bit worrying that I will be not be checked before commencing. Although my INR's are pretty stable to be fair.
I know a friend of mine has been doing "drive through" INR checking whatever that means.... I didn't ask details.
My dad is still on warfarin, he's had a home testing kit for about a year that he does himself and uploads the result to the local clinic once a week/fortnight. Think that's still going to be the case.
When I had my last check I was told INR was all they were doing and any other bloods had to be done at local hospital. My next is May anyway. I suspect this is just local but in any case I probably have three months stock and have always been pretty stable ( Better than 85% per annum).
Could just be Isle of Wight, I guess? Others here have had the call. I have loads of Warfarin stashed away too! (this was NOT panic ordering...ha ha!). She said to hang on to it, in case I don't get on with the new one.......
Interesting point she shared....Warfarin £1 per box. Epoxaban £50 per box, and Government only just agreed for it to be prescribed to more patients......hmm!?
Never been a cost issue/problem here getting DOACs - the cost issue doesn’t take into account the cost of INR testing - factor that into the equation and I don’t believe there is that much cost difference as you only need bloods about every 6 months. It really depends upon the local commissioning body as to what they do/don’t approve. There is no general government guidance.
Edoxaban works on a different part of the clotting process so testing is not required so INR would be irrelevant.
If you self-test, then the cost of warfarin falls. The cost of each strip is less than £2 and if you test every 2 weeks that's about £50 p.a. which is about the cost of one month's worth of edoxaban.
If you are in the 2-3 range more than 70% of the time then warfarin is just as good if not better than the DOACs, so this move would place us at greater risk.
I do think it a personal preference. I have never wanted to take Warfarin as when I was first diagnosed I was travelling a lot and had an instinctive hatred (probably scientifically unfounded but real for me) against the thought of Warfarin and thankfully, my doctors agreed that it wouldn’t be my best option. I have never regretted it and I like the fact that studies seem to indicate that there is a lower brain bleed risk with DOACs and I don’t need to worry about being ‘in range’. I just trust that it works and so far, so good.
I think the brain bleed risk with Warfarin is an important factor. Our d-i-l developed a brain bleed after being on Warfarin for some years. That was a very worrying time to say the least - she had been having severe headaches for some time before they sussed out the problem. The consultant put her on apixaban and she's been fine ever since.
Intrigued to know how you (and others given comments) manage to stash/store warfarin. I am only prescribed 1 month at a time which are on a repeat prescription renewed about 3 or 4 days before I am due to run out. Think I need to be a bit more savvy. Hope you can help ....
I reordered my repeat prescription after about 25 days so I've now built up a stock of about 3m of warfarin, which is for contingencies such as this.
Thanks for the response, not sure how my GPs would react as they are quite strict on issue dates, will have to give it a go .... As an aside, I was asked by Pharmacist very early in January to have a short interview about Warfarin effect and to explain alternatives. Looking back now it makes one question why, and if this very event was foreseen, and being planned for ....
I find I have to keep an eye on the Use By dates on my Warfarin - normally not a problem, but just occasionally I'm caught out. My prescription is three months at a time and occasionally I'm up against it with the pink ones in particular.
Years ago my GP felt sorry for me paying lots for my warfarin prescriptions, and put the amounts up to 100 x 1mg tablets, 100 x 5mg tablets, and 200 x 3mg tablets...
I recall when first started on warfarin thst I was advised to keep a good stock of the various strengths as dosage could change and should ensure that I had plenty.
Thanks for your response Jalia, I am assuming that you are not UK based given the advice you were given about maintaining a good stock of various strengths. That certainly wouldn't apply in my area of UK as far as I am aware, but will check next week when INR check is due .... My doseage is 28 x 1mg per week, and not per month as I previously stated in error.
I am in the UK!!
You could take 1x 3mg and 1x1mg daily to make up to your 4mg daily.....only 2 to pop then !!😃
An interesting point, but I have assumed rightly or wrongly that the GP was controlling issue of tablets via repeat monthly prescription with set date for renewal. With you mentioning cost are you saying the tablets are available off prescription?
No..merely stating as not too costly for the NHS. I can't really see why a GP would object to you having a selection of strengths to select your dose from though. My INR used to vary quite a bit in the early days so this was useful e.g. if I needed to take 7mg I could select 5mg and 2x1mg instead of 7x1mg etc etc
I’m on warfarin and a nurse comes to my house to take a sample the last time she came she took a finger prick test , she said this is what they will be doing from now on to allow them to work quicker.
My doctor asked my surgeon if she could put me on another drug as opposed to warfarin and he said no I need to stay on it.
So I think it may depend on the individual concerned unless told otherwise.
This is interesting . I self test and have a good stock of warfarin and pretty stable. . Enough to keep me going for some months .....
Still Warfarin for me and my GP has just agreed to my self testing. I don't have a good stock of this drug, but you've all made me think about it now. I usually re-order once I get down to having 2 weeks worth left.
Jean
I have enough 1mg warfarin packs to poison a small city if you run out! As the dose changed, I found sometimes I didn't need them so they've just added up 
Thank you, will keep that in mind. I hate waste of medication. Saw so much of that when I worked in a nursing home. Drugs not even opened were discarded.
Have just thought, I never use the 1mg Warfarin. It used to contain E123 Amaranth which doesn't agree with me. I take 4mg a day so take half a 5mg and half a 3mg daily. I think now, some makes still contain it while others don't. When I think about it I have some funny little ways!! Lol.
I had no idea some of the tablets contained ingredients that others didn't! How naive am I... I suppose the amaranth is for the brown colour? I dread to think what they use for the blue 3mg! I will find some use for them, never fear. I will ask the surgery if I can return them once this virus is damped down...
Hi jeanjeannie. I too take half a 5mg and half a 3mg daily. I read some time ago that the 1mg is not prescribed in other countries because of an ingredient which is not good (can’t remember the reason now, I’m afraid).
Think it will be E123 - amaranth.
Hi Jean - did you buy the machine yourself? I have asked about self testing but nurses look very puzzled and shake their heads! One told me the machine costs £1,000's, which I don't think they do.
the testing machines cost around £300
Testing strips are available on prescription but I had to buy the machine - well worth it for personal convenience and holiday times.
Thanks - can I ask which machine you bought?
'Roche' looks similar to a diabetic testing machine only slightly larger. I ordered direct from Roche it's called 'CoaguChek'
Thanks, will look into it.
I have one I bought directly from Roche .Hardly used as now on Apixaban .Very good condition COAGUCHEK . Had thought of eventually selling it but too much going on to get round to it .let me know if interested .
Thank you . I am going to speak to my GP about it. Will let you know.
It is a CoaguChek XS and has all the instructions and paperwork . We sometimes checked readings with the CoaguChek at GP Practice ie did blood test at surgery with my machine and compare with surgery machine. Result was always very accurate .
Most places appear to have sold out of them and can't say when more will be in stock. Yes, £300 to buy new. I bought mine off someone on this forum. You could try asking here if anyone has one they no longer use and would consider selling.
The nurse at my doctors surgery showed me how to use it and was very helpful.
Jean
Thanks Jean
I was very happy on Apixaban but it was changed so that they could keep track on my blood when they gave me carbamazapine for trigeminal neuralga. I am going to ring GP or email and ask if I can go back on Apixaban. Seems more sensible at the moment as the nurse calling to do my blood as been to several people before visiting me.
I moved on to edoxaban last month, not because of the virus, for other reasons: I was INR testing from home but still felt the DOACs were more convenient, so why not... They wanted my INR to be below 2.5 though before moving me onto the DOAC, but if yours is routinely that or below you should be good. Or just eat a few more bits of broccoli and spinach for a day or two? Edoxaban is just a surgery choice, sounds like yours is like that too, but it seems fine. I've had no problems with it at all, touch wood, apart from the doctors forgetting I'd moved over when I went to the pharmacist to pick the repeat prescription up last week - stressful or what! Make doubly sure your arrangements for it to go onto repeat are firmly in place, because the health service is a bit busy and preoccupied at the moment!
Thanks...eatsalottie!! reassuring!
I was recently discharged from hospital following surgery for pancreatic cancer. While in hospital I discontinued Warfarin and was put on Enoxaparin injections. I restarted Warfarin once I was home and my INR nurse told me that as soon as my INR stabilised I would be changed to Apixaban - this was local policy due to Corona virus. I have now been on the DOAC for a couple of weeks. I live in north west London.
Hi WB 
I know of someone on anther forum who has been taken off warfarin for the same reason and prescribed Apixaban . I was able to reassure them that I had been on NOACs for 3 years with no apparent problems.
Hello, my dad has been on Warfarin for over 12 years and they have made him go on a tablet instead so they do not have to do the blood tests. He is not happy about it but has to go with it. That is in Lincolnshire.
They are slightly safer and slightly more effective so I wouldn't worry about it I think warfarin will get phased out eventually when the new drugs drop in price.
Andy
The drawback with these NOACS as far às I'm concerned is that if you miss one dose you are not protected whereas warfarin will stay in your system considerably longer. Who can honestly say that they have never ever missed taking a tablet ?!
Warfarin will not be phased out for all patients. Those with metallic heart valves need it.
I am on Edoxaban. I refused warfarin because I saw how easily bruised my mother was on it and the constant blood tests. These new anticoagulants are an improvement and no frequent blood tests needed. I still had to sto St Johns Wort, fish oil and glucosamine. I am very careful and wear a bracelet and carry a card that Intake Edoxaban. I am keeping clear of the surgery. Keep safe!
That's great, changing to the new generation anti coagulation drugs is much better, the International ratio or INR is not required.
I've been on them for two years with no issues.
I am on apixaban, have been for years and its great 👍 no checks to go through, no side effects so far.
Its alot less hassle than warfarin.
I have been taking Warfarin for years probably 9 years. I had my INR week ago next one May I have not had call could it be just your surgery?
I have been changed off Warfarin because of visiting the surgery. Now on a once a day modern anticoagulate but I had all my Warfarin tablets collected to make sure I didn't take them with the new (as if I would). A little annoyed because I thought I'd drop them down the rat holes around to keep them down!
I had been on Warfarin for over a decade following recurring pulmonary embolism.
To be honest, I felt quite safe and enjoyed a stable INR which meant I didn't need frequent blood tests.
Then I developed PMR three years ago, closely followed by Afib. The resulting medication threw my INR out to the point where I was having weekly blood tests.
Eventually I told my doctor that I was spending more time out of range than in and warfarin was becoming pointless along with the frequent testing.
I told him I wanted to change to NOACs as I had read they were now the preferred treatment for Afib.
Changing to Rivaroxaban felt like going on holiday. I wish I had done it sooner.
I would ask for Eliques?. Much easier to use with NO INR required., Can be expensive though.
I will be so upset! As someone I know was on this drug and I didn’t believe it would be right for me!
Hi,
Do you mean Apixaban? This is one of the newer blood thinners that doesn't need to be monitored with lots of blood tests for it to be adjusted unlike Warfarin. This will mean that you won't need to put yourself at risk of Covid 19 because you won't need to go to the hospital or GP surgery for blood tests all the time. It's better to be safe than sorry and I'm sure your GP would have had access to your blood tests results and perhaps information from any care you have from Specialists at the hospital.
Try not to worry and take care.
TT x.
i haven't heard of this, but been on apixaban for a good year, tis much easier than warfarin, you should be fine, cheers judy
I came off Warfarin years ago and was switched to Rivaroxaban and told I no longer needed the periodic INR testing. I was advised that just before a dental appt. or anything of a minor surgery case to stop taking it the day before and then resume the day after .Never had an issue apart from local bruising to the back of my hand if I for instance hit my hand on something by accident while doing some chore.
Hi Wight baby
My hubby had a call from doc yesterday in UK. He doesn't want to go to surgery for obvious reasons. He also doesn't want to go on NOAC/DOAC because you won't know what blood level is at any given point without testing so how will they know. I think they need to test kidney/liver function first especially with Epoxaban as that can affect those organs - lots on line about that. There is no antidote for these drugs if you bleed like there is for Warfarin. No trials have yet been undertaken for these new drugs either!
Hope this helps.
JaneCx
Ablation without being on Warfarin
The time has come .........
Warfarin blues
