Good morning,
I’m shortly about to start the process of switching from a DOAC (Apixaban) to Warfarin. I would like to go to self-testing as soon as I achieve a stable INR level. My surgery have very mixed views on self-testing but my research seems to suggest it produces better and more consistent INR control.
I would be very interested in hearing the experiences of those on the forum who do self-test. Any tips or advice for a new Warfarin user would also be appreciated, please!
Many thanks!
I self test my INR and it's so much better than dragging myself to my GP's surgery to have one (the surgery is up a hill or up about 35 steps and has just a few parking spaces). My INR is up and down all the time. I can tell when my INR is up as I get little spots that bleed easily.
Go for it, once you get the hang of measuring your INR it's easy. Never try to take a test when your hands are cold, sometimes I'll put gloves on for a while to warm mine up. You can also put them in hottish water for a while. Milk your finger to get the blood out, that is stroke it down from the just above the knuckle to tip.
There are quite a few of us on this forum that prefer Warfarin to other anticoagulants.
Jean
Thank you, Jean, that’s very helpful and encouraging!
I’ve watched a couple of YouTube videos on testing and it does look straightforward but that’s a good tip about ensuring warm hands, thanks. Mine are perpetually cold due to the beta-blocker so hottish water it will be!
Thank you again , TC
Hi Jean where do you get the machine fromThankyou
Just Google it Roche is the company that make them CoaguChek XS
Hi Leeson
I’ve found out that, for self-testing, Roche have produced a newer version of the XS, called the CoaguChek INRange. It’s basically the same as the XS and uses the same test strips but just has additional features, like Bluetooth to allow connectivity with other devices etc plus the ability to chart INR results over time and so forth.
TC
I self test and have my own Coaguchek machine. I get my test strips on prescription but had to supply my own machine and lancettes. I have to provide my results to the plebotomist at the surgery who enters it into the INR Star computer and then tells me what dose to take for the next period. Sometimes I ignore this and do my own thing as I have been on warfarin for the last twenty one years and know my own body. My GP told me recently that I am one of very few patients who are still on warfarin. Apart from when any new drugs are intruduced or changed or I paid attention to INR star my INR has been stable to 90%+ . Once a year I have to go to the surgery with my machine and have results compared to their own one.
Bob, I get my lancets on prescription.
Jean .............. I'm gonna go into a monumental sulk now ............ I don't - gotta buy my own 😭
John
Strange isn't it. Are they expensive?
I was given a box of ( insert large number here) by a nurse friend as they apparently were not the type their practise girls were trained on. At present use they should see me out.
Thank you Bob that’s very interesting to know. They were very reluctant to agree to the change at the surgery and I was told repeatedly that “no one” is on Warfarin these days! It’s taken over a month of conversations with various staff members to get to this point. I think it was the surgery cat who gave the final nod.
I’ve been told that once I’m stable - presumably they meant my INR rather than mentally 😀 they will issue one pack of 12 test strips per year and if I want any more I’ll have to buy them myself. I can live with that.
Thank you again for your reply
Best wishes, TC
That is stupid. The strips come as 24 with the special chip that has to go in the machine or it doesn't work, so in effect they are going to throw away twelve perfectly good strips.
Ah that’s interesting, thanks. It was the head honcho at the practice who told me that, so I will enquire further when the time comes.
Mine don't give as many as 12. They probably use them in a compatible machine before giving me a small number. I've given up on them and bought my own. At the moment, and probably for the rest of my life, I'm on a drug which can raise INR, so I test every few days. I've only been on the drug for a week. When my INR stabilises I will check less often.
That’s interesting although strictly speaking I’m not an AF patient, I had a mechanical AVR (Aortic Valve Replacement) in 2017 and have been repeatedly been told I can’t use other anticoagulants other than warfarin as it is the only anticoagulant licences for use with mechanical valves. Self testing has never been offered as an option though I usually only need my INR done every 6 weeks as it has been relatively stable the only times I’ve needed it done more frequently is when I’ve had infections that have required me to be on antibiotics or have been eating/drinking too much of the naughty foods i.e ; foods/drinks high in vit K or are known to affect absorption of warfarin.
Thank you for your reply Robert. I don’t know if they offer self-testing as an option generally. In my case, lack of nurse time was one of the reasons used as to why I couldn’t be switched to Warfarin, hence my offer to self-test and self manage, if necessary.
Anyway, I’m glad the system is working well for you and thank you again for taking the trouble to reply.
Best wishes
TC
G'day Threecats,
I have been self testing my INR since April 2010, I actually started on Warfarin in January 2010 when my AF was first diagnosed. I originally started off going to my surgery but at the time I was working full time shift work driving buses and it was driving me ballistic trying to fit in my shifts with the surgery INR clinic. Then one day I had a bloody good old moan at the INR Nurse drawing blood and she told me all about the Coaguchek XS testing system. I bought my own device and have never looked back - except when my Cornish GP switched me to Edoxaban. More of that later !
I have read what Bob and Jean have said in their replies and agree with both statements 100% ........... you got that 100% 😊 In particular, reading what Bob said .......... its exactly - EXACTLY - the same process that I use, and Bob and I are in different parts of the country.
So, 2 days ago was my test day. Got my device out, stabbed my finger like Jean says, dropped some blood onto the test strip which I'd already loaded into the device, waited for it and BINGO ! reading was 3.2 - now that put me out of range.
Now when you are set up your medical INR team will probably tell you what range you should aim for. In my case in the beginning I was told my Target Range was 2.0 to 3.0 and my precise Target Value was 2.5. So going back to my 3.2 Reading ...... I rang my INR Nurse at my surgery, told her the reading and she then does exactly what Bob described. No sweat. Then she tells me my next dose and my next test date .......... and away we go. So, because my reading was a tad high she wants me to test again next Tuesday and phone in. No sweat !
I do suggest you 'Google' something like ........... Warfarin, Food and INR, you need to acquaint yourself with foods - and alcohol too. Mind you I don't let my food or booze interfere with things at all. I'm a naughty boy then 😱. Sometimes I've had a perfect run of INR readings 2.3: or 2.5 or 2.7 and my INR Nurse leave me alone for 8 to 10 weeks. BUT, if that happens I'll do an additional INR test myself say at 4 or 5 weeks just for my own peace of mind.
GP's are nowadays indoctrinated by NHS or by their Surgery management to get as many patients off Warfarin onto a NOAC. Mine bullied me and eventually got me onto Edoxaban .... well that was a total disaster ......... I tried it for around 6 months and experienced the most vile, emotionally disturbing nightmares imaginable not even touching on the sleepless nights.
I was so angry I wrote a hard copy letter and hand delivered it to my surgery for the attention of my GP absolutely refusing any NOAC from that day on. Sorted !!
Holidays are no problem either. On my trips to Australia I've taken it with me when my test date has clashed with holiday arrangements, no sweat ! I just make arrangements with my INR Clinic that I email them with my test result .......... once again .......... sorted. Despite all the naysayers there is just no issues once you get into the swing of things.
And talking of naysayers, I'll see if I can locate some NICE reference material which should snuff out any negativity.
Wishing you well on your Coaguchek journey if you decide to go that way.
John
Hi John
Thank you very much for sharing your story. I tell you what though, I wouldn’t have wanted to be on the receiving end of the letter you sent to your GP telling her you were going back on Warfarin! 😀 Out of interest, did you quit the Edoxaban cold turkey, or wait until you’d titrated the Warfarin back up to a therapeutic level? It’s been suggested that I run Apixaban and Warfarin together until I reach that point. The rub is trying to get appropriately timed nurse appointments for the INR checks.
Anyway, based on yours, Jean’s and Bob’s replies, plus my own reading, I’m certainly going to push for self-testing going forwards.
Thank you for your good wishes.
All the best, TC
Im sure I’ve mentioned it before but my father was on warfarin for nearly 20 years. I don’t exaggerate when I say he was a BIG drinker (only in the evening mind). He was also a farmer & a keen gardener & was constantly cutting, scratching & bruising himself. He never had a problem with warfarin. Apart from avoiding grapefruit & cranberry juice, he never worried about what he ate either. I know it’s purely anecdotal but it has made me hugely biased in favour of warfarin. It annoys me when I hear surgeries trying to put people off taking it in favour of DOACs.
Thank you for sharing the story of your father. He sounds very much like my Mother. She’s been on Warfarin for over 10 years now and eats what she likes, too. She’s not much of a one for alcohol, although I have noticed that the cans of Guinness she asks me to get “in case” my nephew calls in to see her seem to mysteriously disappear over time🤔😀
I quite agree with your sentiment regarding surgeries trying to put folk off taking Warfarin.
Threecats,
This is it, an official NICE document.
nice.org.uk/guidance/DG14/d...
John
Thank you for the link, John. That looks very interesting indeed.
Sharon
Hiya TC,
I have to say when I wrote my missive to my GP I was incandescent ! It took a lot of self control to stop saying what I truly wanted to.
How did I kick the Edoxaban ? Well the first thing I did was to take an INR reading to get a fix on the state of my blood ……… just as I would if I’d been on Warfarin. Although one doesn’t need to do this with these NOAC’s I figured it was a sensible first step. There had to be a baseline.
So, on 13 Dec 2023 I took an INR which was 2.4. I Then stopped Warfarin dead in its tracks, and my INR dropped to 1.4 over the following 2 days ….. I figured that was close enough to normal (which in most non users of Warfarin would probably be around 1.1 or 1.0). I also felt I still had enough Warfarin protection in my system …. so on 17 Dec 2023 I started Edoxaban.
Apologies, I thought I was on Edoxaban for 6 months, it was actually 4 months.
On 5 April 2024 I stopped Edoxaban (cold turkey) and restarted Warfarin. On 6th April 2024 I returned to taking my INR reading which gave the result of 1.3. Over the following 6 days I kept checking my INR and on 12 April 2024 I got an INR of 2.0 ……. the bottom end of my theraputic range – which was and still is 2.0 to 3.0 with a precise target INR of 2.5. On the 16 April I had to phone my surgery and report my INR which was 2.8 ……….. back to my old mate Warfarin no sweat, no problems … hey ho ! I must say TC, I could never ever have managed this if I didn’t have my own device and had the skill set to INR test at home.
I would also say and stress ……. I first went on Warfarin in Jan 2010. I sort of retired and moved to Cornwall in Sept 2012, just after the Olympics. I joined my surgery at that time. Arising from my management obsession (in another life on a galaxy far away) with business statistics I’ve always kept my own records. So, here is the rub ……… between Sept 2012 and November 2015 I’d had a number of medical procedures which had necessitated stopping Warfarin short term. On 15 November 2015 I had a partial knee replacement under G.A. and had stopped Warfarin 6 days earlier. I had kept my records/ statistics. It took all those 6 days to get my blood INR down to normal (INR 1.0). On the slab and under the knife I went and hey ho, a new knee. On my return to my room when I’d come round a nurse came in and gave me two injections of Fragmin (a bridging anticoagulant) then that same evening I returned to my normal dose of Warfarin for that day. No sweat after that. All sorted !!
I had the knee job on 6 Nov 2015 with an INR of 1.1 (on the slab etc). Back on Warfarin that night and 17 November I’d returned my INR to 1.9 where it stuck for 7 days, then on 27 November I hit the magic INR of 2.0. All with normal Warfarin dosing. Again sorted. Again, no problems.
I note your two comments …… 1 - It’s been suggested that I run Apixaban and Warfarin together until I reach that point. 2 - the rub is trying to get appropriately timed nurse appointments for the INR checks.
Now with 1) if you want I can search my records and let you have more thorough details of the number of days it took for each activity, but bear in mind this was my track record I can’t say it holds good for all. That said, I don’t see why you couldn’t run the two together but for your own peace of mind you might want to make independent enquiries. Maybe there is a UK based resource you could phone and chat about it. 2) yeah, that was my problem with shift work. But its all solved by self testing at home.
Hope my ramblings here help you, sorry it doesn’t read like a thriller novel though !
Best regards,
John
Hi again John
Thank you very much for the further info. It’s really helpful indeed to read your story and see how long it took for your Wafarin levels to return to therapeutic range after you stopped the drug. Excellent record keeping, too, if I may say😀
I appreciate your experience is individual to you, of course but I get the impression Warfarin is more like the oil tanker in the anticoagulant world, with changes of course being slower to happen as opposed to the speedboat DOACS. Personally I prefer the gradual approach!
Given the rarity of nurse appointments at my surgery, I’ve decided to purchase my own machine sooner rather than later. I think it’s going to be well worth the investment.
Thank you again for your help and for all the detail. I’m a detail person too, so there will be plenty of record keeping going on over here😀
All the best
TC
TC, just another thought for you ...google ... Coaguchek XS User Guide. That should give you access to a PDF copy of what's in the box. Then you can peruse the book at your leisure and see exactly what's involved.
Actually - its all a very similar to the process a diabetic goes through when testing blood sugar. Just the device is different.
John
I went on Warfarin 20 years ago and after a few months, with approval from my GP I bought my own machine as I was fed up with regular visits for blood testing, the machine (which I still have here in the cupboard) cost be £300 at the time but I never regretted it. After several years I was then taken off Warfarin and put on Pradaxa so get tested every 6 months.
Hello
Thank you for your post, I am pleased so many members of the Forum have offered their advice based upon their own experiences. The DOAC and Warfarin are both anticoagulants and offer the same protection in preventing blood clots from forming in the heart. The main thing to remember is your doctor will be providing the best treatment for you based on your own personal medical history.
Have you visited the AF Association webpage? You will find a wealth of information regarding AF and anticoagulation: heartrhythmalliance.org/afa/uk and download 'Preventing an AF-related Stroke' booklet: api.heartrhythmalliance.org...
May I also take this opportunity to invite you to attend our Patients Day on Sunday 05 October, ICC, Birmingham, UK.. We are currently offering an early-bird price to attend! To take advantage of this one-off opportunity, visit: heartrhythmalliance.org/afa...
Alternatively, if you prefer, please contact our Patient Services Team via our dedicated Patient Helpline; +44(0)1789 867502 or via email: heartrhythmalliance.org/afa...
The team are always here to help.
Kind regards
TracyAdmin
Hi Tracy
Many thanks for this and for the links, it is much appreciated . The forum is certainly a wonderful resource for getting sound advice!
Kind regards
TC
You are very welcome, happy to help anytime!
Hi Threecats I have been on Apixaban since 2018 but was having more and more trouble with excessive bleeding. My GP pharmacist told me to reduce from 5mg twice a day to 2.5mg but I was still have having nosebleeds and dramatic bruising.
The GP then tried me on all the other anti coagulants in turn . Endoxoban was the worst I vomited within 15 minutes every time I took one so I was completely uncoagulated. I had other problems with the other DOAC s meaning I could find nothing I could tolerate.
This coincided with my check up and my cardiologist was horrified when I showed him photos of my bruising and said I must swap to warfarin straight away so I could vary my dosage to stay in control. My GP was very unhappy and did her best to stop me but the cardiologist wrote and instructed her to swap me to Warfarin. I started on January 2nd and I quickly got my INR in range with help from the INR team at the hospital. I have recently had major foot surgery so I stopped the warfarin for 5 days pre surgery then had an INR test before I left hospital and the team gave me the dosage regime and after 3 weeks I am back in range.
I am hoping to be allowed to buy my own machine and do my own testing submitting my results to the INR team . 🤞no more 7:30 am blood tests or arguments with the “Health Navigator” (Receptionist!) about there being no blood test appointments available for 2 weeks.
I am pleased to have swapped and have noticed that I am no longer shedding so much hair - happy days!
Rowena
Hi Rowena
Thank you so much for sharing your story, it’s very much appreciated. I’m very pleased your cardiologist took the appropriate action.
Like you, I’ve had stiff opposition from my surgery to my request to switch and have been told repeatedly that Warfarin is: no longer used; is very dangerous; is a nightmare to control; requires endless blood tests; restricts what you can eat….. you name it and apparently Warfarin causes it, according to them!
In my case Apixaban, which I’ve been on since last May, has been causing me increasing joint pain, particularly in my right shoulder, hands and feet and dizziness, as well as causing me to feel what I can only describe as “out of it” for several hours after taking it. As I’m the sole carer for my mum, I need to be on the ball! By a process of elimination I’ve found the culprit hence the switch request. It’s taken two months of patient persistence but they have finally agreed and so now I’m awaiting the prescription.
I’m pleased to hear about your hair, too, as I’ve recently developed alopecia, so hoping that might resolve with the change of drug , too!
I hope you are recovering well from your foot surgery and thank you again.
Best wishes
TC
Hiya Rowena,
Found your post most interesting, and also comments from Threecats. Personally, and it is my view only, that GP's are being directed from "On high" to get as many patients off Warfarin and onto these DOAC's as they can and of course behind this all is this damn 'umbrella' organisation, with its roots in America, known as Big Pharma.
My GP switched me to Edoxaban and what followed ( as I've said) were the most vile, mentally and sleep distrubing nightmares ever. Nobody in my surgery ever considered carrying out tests to see my reaction to these new DOAC's.
Your experience after your surgery has been identical to mine when I had my knee replacement done. It really is not a problem at all.
I've had two health issues one with my only major injuries unit hospital which I complained to my Westminster MP about requesting he also take my issues up with the then Secretary of State for Health .......... and lo and behold all sorted !! The second was with my 'Health Navigator' as you so aptly put it .......... and she too started humming and harring about appointments. In the end I 'Totally lost it' and blew up like Vesuvius ......... sorted . Not had a problem since. Sometimes, within reason one just has to kick ass !
So, Rowena, its onward and upward kicking ass as we go ! 😂😂
John
I have been on Warfarin for over ten years and generally has been very stable . I don’t self test but visit my local health centre as our GP surgery doesn’t carry out the checks. The only time I tend to have a problem is if I change medication or most recently I required two lots of antibiotics and steroids for a bad dose of bronchitis which really knocked my INR off . I’m lucky that the Warfarin clinic I attend are excellent and if I phone them to inform them of a change in medication they get you straight in for check and if required weekly until things are back to normal. For me I do not want to self test as I receive such great care from my Warfarin Clinic .
Anyway good luck with your change to Warfarin I hope all goes well, I’m sure it will.
Thank you for your reply Stu and your good wishes. It’s good to know that Warfarin is working well for you. It certainly sounds like you are getting excellent service from your anticoagulant clinic, too.
I hope you’ve fully recovered from the bronchitis by now, it sounded like you had a very rough time of it.
Thank you again for taking the time to reply,
All the best,
TC
Hi, I never understand this reluctance to go for a professional test. I've always found the staff v helpful and they will advise on warfarin use if having dental treatment or a medical procedure. Any variation is dealt with straight away, whereas if you self test who deals with an hiccups/variations. It may depend on how stable your INR is, mine varied at every test.
Hi 2learn
It sounds like you have a very good anticoagulation clinic taking care of you, which is good to hear. Unfortunately, for me, INR checks are provided by the nurses at my local GP surgery. That in itself is absolutely fine, of course. The problem is that it is a very busy practice and appointments are hard to come by. I’ve already had to delay starting Warfarin, as I will need an INR check two days after starting and the first nurse appointment available was in a month’s time, hence I’m looking into the self-testing option! I’ll then be able to message the surgery with the result and someone can plug that into their computer software and let me know the dose change. That’s the theory, anyway!
Warfarin preferred to NOACs ?
I'm new to Warfarin and AF, I am just in the initial assessment stage.
Self-testing machine for checking INR
Long haul travel with self testing machine 
