I would be very interested to hear how this is done practically, and how different clinic’s policies on self managing might differ.
I bought a CoaguCheck XS machine in September 2011, and let me just make it clear that I am not waking up the debate that has been raging here previously! I am merely explaining my research and experience so far. I was told by Roche that since I had APS I was not a good candidate for a CoaguCheck machine, I didn’t buy it there and then but took a week on the Internet researching this issue. I found that many places it was referred to ‘a small minority’ not being able to use the machine, and when they were not able to, these patients would get an error message on their machine. I got Roche to confirm this too; as long as you actually get a result on your display, you can trust that result, but if you are not a suitable patient you might just get one error message after the other. I decided to take the chance and bought a CoaguCheck XS when on offer for £200.
And I am so happy I did that!!
Since then I have done testing parallel with weekly venous samples at my local hospital, I have 19 tests so far, of venous sample INRs and my own INRs take within 5 minutes – I do them in the blood room before I leave so I know they are taken at the same time. Most of the tests have a difference of 0.1 or 0.2, mostly my machine is higher. A few of the tests have a difference of 0.3, that’s all. My haematologist calls this difference ‘insignificant’.
Now I am more than ready to move on to self testing, and as soon as possible to self managing, both of which has been approved by my haematologist at UCH in Central London. But it is my local hospital in Newham that manages my INR, as it is a long way to travel in to Central London, and although my haematologist here at my local hospital also agrees that I can start self testing, I would be the first patient they have ever had who would be self managing – and they don’t really know what protocols to create for me. I even get the impression that self testing is a bit of an issue, I haven’t been allowed to start yet, they are dragging their heels because of the APS diagnose - although I have very good results to show for that my machine is consistent with venous samples.
I would very much like to know how people that self manage get their prescriptions for Warfarin. Currently, I have to go with my yellow book to my pharmacist, he copies the relevant page and faxes it to my doctor office, they faxes back a prescription for 4 weeks according to the dose written in my yellow book. If I start self testing, or even self managing, I won’t have a yellow book to show the pharmacist. In my borough you are not allowed to get Warfarin on repeat prescription, it can only be given by showing your yellow book. Is there anyone who has Warfarin on repeat prescription so you can just order when you need more? If you self manage, how do you get new supply of warfarin?
If you self manage, or even just self test, who is responsible for you, your hospital or your GP? Or is St. Thomas responsible for your self management? I have just had my first appointment at St. Thomas. Yay!! …but there were so many things to talk about that the issue of self management didn’t come up.
I am seeing my haematologist at the local hospital next Tuesday, I need to come armed with information for her so she can set things in motion, and I want to start self managing as soon as possible! All relevant information is very much appreciated, as my hospital needs to create new rules – they simply haven’t done this before
Take care,
Helene
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Helene
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I gave a donation of £ 300.00 to my surgery so that I and any other patient had difficulties giving blood I was very happy with the machine my District Nurse used to warm it in her bra lol as it showed error when cold all was going very well until our health board stuck their noses in and stopped the machine so now I am back to getting blood test nearly every friday Good Luck sweetie x
i have been self testing for 8 yrs my Gp leaves it in my hands, He said he would dread the idea of having to be responsible for dragging me in for tests every week . I have to self test because my inr is irratic and unpredictable. I have managed really well and touch wood not had any problems apart from on the occasion when i decided to let the DR's INR clinic have a go at managing it for me about 4 years ago , That was a nightmare and resulted in a DVT but it certainly made them realise that i am better off looking after my own INR, all the best Mully
Thanks for replying. Do you report your INR results to your GP? If so, how often? Do you have to go and see your GP every time you need a new prescription for Warfarin, or is it on repeat? My INR is also pretty erratic and I am sure I can manage this better myself, one of the reasons why I want to do this! Take care.
Hi, I bought my coag machine last year. At first my GP was a bit cautious, but as time has gone by, he has realised i can manage my INR's very well. I was testing alongside of lab bloods,but the time lapse with the blood sample did not show the same as my coag machine, as the sample has to travel 20 miles, to hospital lab, of which i explained to my GP, would alter the result. I take my INR's and then ring the surgery for my dosage of Warfarin. I have just returned from an holiday in Trinidad, which i would not have been able to do if i had not purchased the machine. While i was there, i managed to keep my INR's in range and managed my own dosage. I just ring for a repeat prescription and once a week i ring in my result. Hope this is helpful. Bernadette
Hi, No I don't see my GP unless I have a problem, my warfarin is on repeat prescription and so are the test strips . Like i said earlier i decided to let the INR clinic have a go when i first joined a new GP practice as they were a little cautious as they didn,t have another patient with hughes , I let them mess up to prove a point which was really stupid as i ended up in casualty with a dvt, anyway after their major cock up they were relieved when i took over doing it myself again ( i think they were relieved i wasn't going to sue them) but the ' I told you so wasn't as much fun as i hoped it would be when i ended up with a DVT
Hi sorry if i've replied more than once but i think i pressed the delete button, yes i have warfarin and strips on repeat and only see the doc if have a problem and then his face turns a shade of grey when i walk in, I have had about 4 different GPs from moving house and they have all been extremely relieved they dont have to deal with it , Take care Mully
The problem is, the test strips contain phospholipid while we have antiphospholipid, thus for our blood clashes with the test strips, as it did mine in over 20 cases and changed the venus and the finger stick, with values of atleast a whole number...
I’m sorry to hear you were one of ‘the small minority’ that couldn’t use a finger test for INR. It is going to be such a great relief for me not having to go to the hospital, especially since I have an unstable INR most of the time. Take care.
i have Lupus as well as APS so my INR greatly varies everyweek.
I bought the coagucheck just over a year ago and i haven't looked back.
I spoke to my warfarin clinic, my consultant and my doc before i did this to make sure it was ok with them. Roche were also very upfront when i spoke to them and said that i MAY not be compatiable for the machine, but turns out after a finger prick test and a venous test the results were the same.
I then had to go for a training lesson with the warfarin clinic and a person from roche. I also had to sign a contract on the spot.
I now test at home every thursday and ring my results through to the warfarin clinic. the clinic then advise me of this weeks dose which i write in my yellow book.
I have a repeat prescription from my docs, i am also lucky enough that my docs prescribe my testing strips as they agreed that was cheaper for the NHS than me going to the hospital everyweek.
If my levels drop below 2 or go above 5 then i have to go to the clinic to double check.
Hi, sounds like you got the self testing sorted quite well, would you ever consider managing your Warfarin too or are you happy to let the clinic decide the dose for you?
I also get the strips on prescription from my GP, so no problem with that, but they refuse to give me Warfarin on repeat prescription, so that is one of the ’red tape’ issues.
Wow, so you got training sessions with a person from Roche, how did you manage that?! I haven’t been trained by anyone, I have just read the instructions and seen the video that came with the CoaguCheck XS machine. I don’t really feel I need any training now, after using it weekly for 5 months, but I am just curious
Having proper training was one of the specifications from the warfarin department, they also made me sign a contract stating that i would ring in each week etc
I would love to self medicate as my range is 3 - 4.5, when i am below 3.5 and above 4 I feel rough, but the clinic just say its within range and won't change my dose.
Seeing as my levels change by huge amounts each week (last week 4.3, this week 3) my dose changes all the time so its not really a problem
I self test, my warfarin is prescribed by local heam clinic co-ag nurse as gp won't prescribe as not taking INR, heam co-ag nurse also prescribed test strips and lancets. I write INR result and dose in yellow book so could take to pharmacy in an emergency for warfarin and also so written trace of results, prescriptions. Hope you ok
I had to sign a disclaimer that I would not self dose my warfarin by my GP. I can only adjust upon his instruction to do so. I have self monitored for 3 years now and have a quaterly INR check at my GP.
I have self tested for about 7 years. I have the new machine now the coaguchek XS, this has no issues with being cold and strips do not have to be stored in the fridge either and it is much smaller. When my local hospital clinic knew I had a machine they told me they would block me using it and that GP's would not prescribe the strips in my area. However mine did and thought it was silly to make an issue out of it. I have been alone ever since as they told me not to come back. So I self test and alter my dose as I wish and report to nobody. My GP is happy and says he realises I now under stand the warfarin and reactions so well I am better at it than they are.
Hi Jade, good to hear you have a sensible GP! That means you are the first one to reply here who both self test and self manage, as it seems like the rest here are just self testing. It is interesting though that it is your GP that has allowed you to take the full responsibility, and not the Warfarin Clinic. I am trying to get both of them to be happy with me self managing, since both my haematologists already have said yes to me self testing and self managing! Not sure if I can manage that either….Take care.
Do you know why your clinic had such negative views about the machines? Thank goodness your GP agreed for you to use it after those comments!!! If people want to use one and can be relied upon to use them correctly then there shouldn't be a problem. Like you, I self medicate. I only test every couple of weeks and don't change my dose unless it has moved what I consider to be too far out the top end of the range. I try to keep it away from the lower end.
I have been self-testing for nearly three years and have a contract with the inr clinic at my surgery. I am not allowed to self-dose/manage and my daily dosage is dictated by the readings I give the nurse when requested - and I can phone in between times if I need to. I have a yellow book that I fill in myself and have a twice yearly machine check. My test strips and warfarin are on repeat prescriptions.
Hi Caroline, sounds like this is quite sorted for you, especially since it seems like you have a Warfarin Clinic at your surgery, so you don’t have to go via a hospital. That means you are reporting your INR results to the same place where your Warfarin is prescribed. Very good, I wish I could have that.
Would you have liked to manage your Warfarin yourself, if you were allowed to, now after nearly 3 years of self testing? Or are you happy with leaving the responsibility to the clinic?
Helene the reason I am totally alone is that the warfarin clinic won't manage me if I use my machine. I got mine on the advice of Prof Hughes. I went to the clinic in the beginning to learn what to do, they discovered I had a machine and told me if I dared to use it I should not come back to the clinic. They said they had tried to get all GP's in the area to agree not to prescribe the strips etc. Luckily my GP then saw no reason why I should'nt do it. the rest is history. my GP told me just today he feels I know much more than him and understand inr better than he does. I have worked out recently exactly how much a portion of broccoli takes off my inr reading for instance. Mind you I have not mastered yet which way my fluctuating hormones are going to take it.
Jade, I am sorry to hear all the troubles you have had with your Warfarin clinic, seems like they need a bit of updating on their knowledge. If they had let you test alongside venous samples for a while they would soon had seen if you were suitable for self testing or not. It really is as easy as that. Not everyone will be suitable, but the majority will, and it is a shame that we have to fight our way through an NHS system that isn’t up-to-date with info like this – however rare our condition is!
Hold on to your GP, doctors like him are like gold dust
As for working out INR and what affects it, I have worked out that I can eat 2 eggs in one day without it affecting my INR, despite eggs being on ‘the list’. These things are highly individual; we all have to find out what we can safely eat without having an INR like a yo-yo, and that’s impossible without a self tester machine.
I am sooooo happy I bought mine, best money I ever spent.
I have my own coaguchek machine and self manage my warfarin. My GP likes me to have a venous test every couple of weeks at the surgery and I use my machine to check my INR if I am on holiday, feeling unwell or to make sure I am getting a similar reading to the surgery. My coaguchek reading is usually about 0.5 higher than the venous reading so I always take this into consideration.
My GP is happy for me to manage my own warfarin as I have been taking it for about 10 years and she has no worries about me doing it. If a venous reading is too low or too high she will ask how much warfarin I want to take so she can record it in my notes, its my decision.Occasionally at the surgery I'm given a printout of suggested doses but these are totally ridiculous for me and I would probably be dead if I followed the suggested computerised weekly programme!!
Here is an example: INR reading 4.4 (so slightly high)
My INR range 3-4 (I usually take 10mg a day and can go down by 2.0/2.5 points if I miss a dose)
print out says: Tues - omit
Wed - omit
Thurs - 7mg
Fri - 6mg
Sat - 6mg
Sun - 7mg
No way would I do this!!! I usually give a little laugh and say 'I don't think so !!!'
Hope this info about my self testing is useful to you. Sounds like I may be one of the lucky ones who has total control over their warfarin. The other GP's at the surgery are also aware I self medicate my warfarin and everyone seems quite happy with the situation.
I've been self testing and self managing with my GP's consent for 10 years now and, apart from three months post heart surgery, when my CoaguChek was giving false high readings - Roche were very good and discussed this with me but they did not know why this was happening - I've managed my INR very successfully. For those 3 months, post survegery, I had blood draws for labs tests and, at the same time, my sugery sister popped a blob of blood on my machine, so that we could compare the results. They results came back into sync after 3 months and I haven't had a lab test since. My GP lets me get on with it and I don't send her my test resulats nor go to an INR clinic.
INR levels flutuate, in my opinion, much more with what you eat and drink than with Hughes flares. Leafy green veggies, especially sprouts, and ofal, liver etc., knock my INR right down. Too much alcohol has the oposite effect. So the main thing is consistancy in all things; food, alcohol and warfarin dose. Don't try to micro manage INR, it is a recipe for over/under shooting. Only adjust warfarin doses if a trend in INR up or down is observed; an odd day, where a reading is up or down, is not a reason to change dose.
In answer to your question - no I wouldn't like to try self managing my warfarin. I won't say it's not tempting sometimes to adjust the dose if I'm out of range but don't want to run the risk of getting it wrong, or my surgery refusing to allow me to self test.
Thank you all for your replies, you have all been very helpful and I feel I now can come to my appointment on Tuesday next week armed with good suggestions to how I can self manage my Warfarin. I spoke to the head nurse at my Warfarin Clinic today, and she said if I wanted to self manage it would have to be my GP who would take over the responsibility of me. I find that a bit odd, since it is my two haematologists who both have agreed that I can self manage, but I assume the doctor who prescribes the Warfarin also needs to be the one responsible – which is my GP. I don’t know what my GP will say, but hope that the backing of my two haematologists will be enough for her to say yes!
Dave and Jane; thanks for your advice, the problem with micro managing and hideous Warfarin dosing is one of many reasons why I want to do this myself, and why I believe I can do this better. I had a small spike in my INR last autumn, which resulted in a dose reduction from my clinic, and that lead to yet another DVT because my INR of course dropped like a stone – to 2.1. My range is 3-4. Last week I had yet another spike, this time 4.3, but only 6 days before I was 2.7. I begged the clinic to not change the dose but wait 3-4 days and do another INR, but was not heard. They insisted in missing one day and then reduce dose. Today, five days later, my INR was 1.8. I am now on Fragmin and today I have been told to take a 15mg dose to quickly get back in range. This was so unnecessary, and although bleeding is of course a risk when INR gets too high, the risk of getting a DVT whilst being too low is probably much higher. I am tired of having debates with the nurses, and they are tired of me interfering in what they see as something they know better. All they can do is advice what their computer program say though, and that doesn’t look at the patient’s INR history, only what has happened since last INR test.
When I am getting control I am NOT going to micro manage, that’s what the Warfarin clinic is doing, and that’s not working for me. I will, as you say Dave, look at the trend – that’s what I have been pleading with the clinic to do every time we have a situation like now. I am very good at keeping diet, medication etc in check and I am not drinking alcohol at all, so for me it is my various conditions which have a temporary impact on my INR. My list of conditions is quite extensive, APS is just one of many (‘my story’ is coming soon, still writing it!).
Thank you again to all of you, I really appreciate that you all took time to answer me, and I hope all this information maybe was useful to other people too who wondered about self management of Warfarin. Take care
Just reading through at it looks like those that have had different machine readings to venous readings get a higher reading on the machine. It seems to be going the other way for me with the machine reading lower than the venous blood and the dr has decided the machine is not suitable for me. I much prefer a blood draw to the finger prick but its not as quick and convenient.So six of one and half a dozen of the other.
I agree about the micro-managing by health professionals ...that is what is happening with me I think. My target INR is 3.5 with the dr happy for me to go to 4. My reading was 4.1 the other day so I had to reduce the dose ...If they had taken another sample it probably would have been different. 0.1 is not a big enough difference to make a change on surely.
Surprised you had to change the dose as you were only just outside your range. But then the professionals don't really like our levels to be above the top end do they, whereas we patients prefer our INR to be at the top of the range raher than te lower end!!
Further to my comment above, I always try to keep on 10 mg if I can. I don't worry too much if I'm slightly outside the range at say 4.2. If I go up to 4.6 I would probably have a couple of days taking 9 mg and then go back to 10mg. If the reading is over 5, I either will omit one dose, although this has the effect of dropping the INR reading down by 2.5 so I have to take that into consideration, or i'll take 5mg so the drop isn't too drastic. I must admit I haven't considered keeping to a particular diet and wheter certain foods affect me. I do know that a glass of red wine can increase my INR by 0.9. Like many people on this site, I prefer to be slightly higher than lower.
For those who have been on warfarin for a while and think they would like to be able to self medicate, I would recommend it if your GP/warfarin clinic will let you.
Despite all my posts above, I realise I haven't mentioned that I get my warfarin and the test strips from my GP on repeat prescriptions!! Initially my PCT only wanted me to have one tube of strips a year, but in recent years they seem to have relaxed this. In fact the last 2 occasions I've asked for more i've been given a box with 2 tubes in !!
Hi Jane, thanks for all your replies, have been in bed with terrible migraine, as I get when my INR is low. Good you get strips and Warfarin on repeat prescription, I get the strips, no problem so far although have heard on the grape wine that my local PCT is considering stopping strips on prescription! Not sure how they will handle my Warfarin now that I want to self manage, seems silly if I need to fill in my yellow book myself, bring it to my pharmacy to get it scanned and faxed over and then wait for doctor office to issue according to yellow book, which I will have filled in! Might just as well have a repeat prescription then? But will they see sense?? I will keep you all informed
Good for you Helene for going ahead with self-management. My situation is a bit different because I'm in the US and we don't seem to have so many hoops to jump through as those of you in the UK.
For the first few years after my APS diagnosis I tried to be a good patient, go to lab, and follow my clinic's advice on dosing, but every time I did my INR went awry. Now I use my coagucheck every week and manage doses accordingly. The clinic still calls every now and then to ask for my results because they're required to keep current flowsheet notes on INR and doses.
Unfortunately I sometimes find myself fudging my report of INRs or doses because they'll try to change things again, so I tell them what they want to hear. Not what I want to do (and I'm not suggesting anyone else follow my bad example) but it's the only way to keep my INRs under good control.
I know that if I change my diet, eat more green veggies (high vit K), have a little wine, am sick, or take anti-inflammatory meds for joint pain, I need to compensate for a day or two with a minor warfarin dose change. Clinic is not able to manage such subtle daily changes and tends to make radical and clumsy alterations which then send me way out of range.
You might have to start with checking a bit more often until you get comfortable with management, but you know your own body and what works for you. Your clinic is locked into a "one size fits all" plan which doesn't accomodate the volatility of APS-related INRs.
Hi Mair... l live in Ohio and my docs just wont allow me to do self management. I have been on coumadin 12 years now. Maybe I will have to go about this differently....and suggestions?
I recently purchased a self test machine due to the amount of time spent to and fro from GP and hospital and as my hubby is the one who ferry's me around whilst doing his job, I felt that I need to be in control and on the advice of ST T that is what I have done, however, the Haem here are not very planned even though my GP is okay, I have tried to talk down here but cannot seem to get anywhere. Who actually writes out the plan? is there a dosage chart? I have checked my INRs on the days I go to the Haem and they are identical.
Until I can get some advice down here I do not know what to do.
I can understand your frustrations, exactly where I have been up until recently. It seems I have moved one step forward in terms of self management as I have seen my haematologist and she has now formally agreed to me self managing. She will now write to my GP to get her onboard, as it will be my GP having the responsibility for me as the prescriber of Warfarin. I don’t think that will be a problem, it is just a question of getting the practical side of it in order, especially since I am keen on getting Warfarin on repeat prescription and not having to go to the doctor office or pharmacy every week/fortnight to have my yellow book scanned to get a new supply as I do now. As for dosage chart, your Warfarin clinic or haematologist can print out a dosage chart according to your INR range from the computer software they use, that will give you an indicator of what changes to make if you are too low or too high. That will be the same software they use when they tell you to make changes to your Warfarin dose. If you are really keen on self managing, not just self testing, speak to your GP and get him/her onboard first, alternatively, go through your haematologist as I did. The nurses at the clinic can’t make any decisions or start this for you, but you should still be registered there so you can come and do a venous sample INR occasionally when you feel you need it and to make sure your machine is still producing correct results.
As an alternative, you could do just self testing for a while, if you can’t get self managing where you live, that will take the pressure off you and your husband having to turn up at the clinic. With self testing you will use your machine to self test typically once a week at home, phone or email your results to your Warfarin clinic or GP, they will look at the result and phone or email you back telling you whether to continue with the same dose as before or make any changes. That means you don’t need to take responsibility of deciding what dose to take, but you don’t have to travel to any clinic. For many people that is a good compromise. If you already have talked to your GP about this I would go back to the GP and explain exactly what it is you would like to do and ask if he/she can sort it out for you.
I am self testing now, but still no plan via Haem oupatients, I still go once a week and I test inbetween, also to double check that the machne is working correctly, I take my INR and then go to the outpatients clinic to have blood taken from arm and yes it is the same. This week felt a little odd and see that my inr level had gone up ( am am between 3-4) to 4.1 instead of taking the 5mg one day and 6mg the next alternatively I drop to just 5mg a day and just tested and it is 3.9 and I am good at 3.7. I want to be in control of this. My GP said speak to Haem on Monday.
Seems that here in the US...at least in my experience that self monitoring is so out of the question. I have asked and pleaded...with always "No" being the answer. I know my body...they dont. arg.
On my second Coag machine now, upgraded to the more convenient XS when it came out. Get my strips on script. I have been on warfarin for 30 plus years and for as long as I can remember I've decided my own dosage. I have a cross check venous lab sample done every so often and I tell that what I was earlier that morning so they can see the results are inevitably close.
They use the INRstar computer program to work out patients dosage but I completely ignore it as it is not set up properly for me and it becomes a question of garbage in (or false assumptions) and garbage out. I test every other day and have a target of 3-9 to 4.0 and manage that pretty well but, most importantly, I can react pretty quickly to any result outside of the target. I also have a box of heparin vials for immediate injection should it fall below 2.0
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