Hi all,
I was wondering if anyone has a self testing INR machine who could advise if they recommend it and to anyone who know how much they are, where can i get one etc. Spoke to the nurse at the INR clinic who said she would try to find out but doesn't know much herself.
Anyone with any info would be great to hear from you
MJ x
Hi, I don't know how effective these machines are, however I have tried to purchase one of these, and found they are really expensive. For new they are over £600, I looked on eBay and gum tree and found a second hand one for £300, still very expensive. If you find somewhere cheaper, please let us all know. Good luck, and take care. X
Although many use them without issue they aren't accurate for everyone and I'm one that they aren't accurate for so maybe see if you can do a comparison between a machine and venous draw for several weeks before you take the plunge.
I use such a tester - and for me it is great - it is accurate and because my INR is a rollercoaster it is very nice to have one. In Denmark we have to learn to use it at the hospital before we are alloved to have one - and we report the results to the hospital too - so we are not without control 
Hi
I Self monitor and use the Roche Coagucheck XS. It was £400 when I bought it 5 years ago and it has been worth every penny. see link.
roche.com/products/product-...
It means I am independent in the most part (can check myself whenever I need to) but I am lucky I am fully supported by my local hospital who see me 6 monthly to check my machine against a venous test.
One word of warning is that not all local health care authorities support this and do not allow you to get the test strips required on prescription, which would give you additional cost too.
Good luck..
Jo.
Hi this is an issue which is frequently debated on here, and here is a recent reply and post from kateH:
Self testing is up to the individual and many Hughes patients have absolutely no problem whatsoever with the test strips. However, please read the following which will be available on our new website once it is launched in a few months.
INR and self-testing
Most Hughes syndrome patients will be on life-long anticoagulation and, for those who have had a serious clotting event, the current treatment usually takes the form of warfarin.
• Warfarin
Warfarin is a powerful anticoagulant which interferes with your blood clotting process in order to prevent blood clots from forming. It has been used as a medicine since 1954 and is considered to be a fairly safe and stable drug.
One major drawback of warfarin treatment is that, because of the way it affects your blood clotting process, your blood needs to be regularly monitored. This is not the case with other anticoagulants (link to anticoagulants.htm) such as aspirin and heparin as they work in a different way.
It is necessary to measure your blood thickness because it must fall within the INR range specified by your doctor: if it is too high, there is a risk of bleeding, but if it is too low there is a danger of clotting.
The most common side effects of warfarin are bleeding and bruising such as prolonged bleeding from small cuts, nosebleeds, large bruises under the skin, and bleeding gums when brushing your teeth. You should seek medical advice if you notice any sign of major bleeding or bruising.
• INR
INR is an acronym for the International Normalised Ratio and is a test which measures the length of time it takes your blood to clot compared to normal; normal blood has an INR of approximately 1.0. The INR test was developed by the World Health Organisation so that tests would be standard throughout the world, allowing people who have to take life-long warfarin to travel and get comparable blood tests wherever they are.
• INR range
Each patient has a target INR which is set by a consultant according to their condition or disease and medical history. The dosage of warfarin can vary widely from person to person, some patients only need 4mg a day while others may need 18mg or more; therefore, when you first start treatment, the warfarin dose will be adjusted up or down to achieve your target INR. The strength of warfarin tablets is clearly marked by the colour and number stamped on them. If the INR is too low then the dosage is increased; if the INR is too high then the dosage is decreased.
For the majority of people who have heart conditions such as atrial fibrillation or who have had a blood clot but do not have Hughes syndrome, an INR of between 2.0-3.0 is usually sufficient and tends to be the norm.
However, in many patients with Hughes syndrome, the blood is extremely prone to clotting and an INR of 3.0-4.5 is sometimes necessary. The aim is to find an INR target range as low as possible, but for the patient to be relatively symptom-free. This message is very important as patients who continue to live with symptoms (link to symptoms.htm) can find the condition quite debilitating or may even have further severe clotting episodes.
• INR monitoring
Everyone taking warfarin will have their INR monitored through regular blood tests either by a venous sample or finger prick test carried out in their GP's surgery or anticoagulation clinic.
It may take several weeks for your target INR to be reached mainly due to the fact that warfarin reacts with many external factors which, in turn, can affect your INR. Warfarin is particularly sensitive to diet, alcohol and other medication – please look at our Living with Hughes syndrome section (link to Living with HS.htm), for detailed information, and we also recommend that you watch the excellent video produced by the anticoagulation unit at Southampton Hospital which gives practical advice and information about warfarin:
Your INR will probably be checked daily until it does reach your therapeutic range. After that it will be about twice a week for the next one to two weeks, then weekly until it is stable; once it stabilises, you should then have tests every six to twelve weeks. If you do need new medication or you become ill, it will be necessary to be tested more frequently until the INR settles down again.
However, many Hughes syndrome patients will find that their INR fluctuates for reasons still unknown and it rarely stabilises. Consequently, a lot of people have benefitted from self-testing their own INR.
• Patient self-testing
Self-monitoring can be particularly useful for people with busy lives who have work/family commitments, for those who find it difficult to travel to clinics due to distance or disabilities, for overseas travellers and, of course, people who have highly unstable INRs.
You can self-test by using a portable hand-held machine to measure the INR in a drop of blood. This gives you freedom to test from the comfort of your own home, at work or while away on holiday or business.
There are several monitors available on the international market but, in the UK, there are currently only two: the Coaguchek XS which is made by Roche Diagnostics and INRatio which is manufactured by Alere.
When you self test, you take your own INR reading from the monitor and then give this data to your doctor or nurse. Based on this information, they will then advise you on the dose of warfarin you need to take. Following appropriate training and experience, some people feel confident enough to self-manage. This means they take the INR reading and adjust the dosage themselves.
• Points to consider before buying a self-testing machine
Self-monitoring is not for everyone, but it can give you a better quality of life and lets you play an active role in your own health care. However, before you make the decision to buy a monitor, please consider the following points:
1. You must be manually dexterous so you can operate the machine. It involves taking a finger-prick test and applying it to a test strip.
2. You should have reasonable eyesight so you can take the readings as well as use the monitor.
3. Can you get the test strips on prescription? If your GP’s surgery is unable to prescribe the strips they cost approximately £65 for a box of 24 (based on 2012 prices) – this is unaffordable for most people.
4. Will you have the full support of your GP or anticoagulation clinic? This is essential as they will help to train you to use the monitor, be prepared to take your readings and decide what to do with the results. We suggest you make an appointment at your GP surgery/clinic to discuss your options.
5. Does your budget stretch to £300? Both monitors on the UK market currently retail for £299 and they are not available on the NHS. The Coaguchek XS can now be bought on a 24 month payment plan which puts the cost at around £13 a month.
6. You should still be prepared to make regular visits to the surgery/clinic initially so that the readings you take from your monitor can be compared to readings obtained at the clinic.
• Will the INR results be the same?
It is now widely accepted that finger-prick testing is just as accurate as venous tests with many surgeries now opting for finger-prick testing as standard.
However, it is common for the INR results between the two to differ slightly – usually between 0.1-0.8. This small discrepancy is caused by the different sampling methods and is considered clinically acceptable as long as it is consistent. Therefore, it important to run parallel testing for several weeks in which your own monitor results are compared to those obtained in the anticoagulation clinic venous tests, and that your healthcare team is aware of this difference.
From patient feedback, we also advise that you recheck this differential each time you use a new batch of testing strips as it can vary slightly. The testing strips are supplied in batches of 24 or 48 so, when a new one is opened, make sure you get a venous reading from the anticoagulation clinic, compare this with your monitor’s results and make a note of the difference.
• Is it safe for Hughes syndrome patients to self-test?
Due to the instability of INR levels in Hughes syndrome patients, self-testing is often a sensible approach both in terms of looking after your health and managing your quality of life. It allows you to test immediately if you are feeling unwell, and also means you can get on with your life with fewer visits to the anticoagulation clinic.
Once the slight consistent discrepancy discussed above has been identified, it will be possible to know exactly what your INR range should be on the self-testing monitor. With this taken into consideration, self-testing for Hughes syndrome patients is considered to be as suitable as for anyone else but there are special precautions for people who test positive for the lupus anticoagulant.
There are three tests (link to bloods.htm) which look for antiphospholipid antibodies: the anticardiolipin (aCL), the anti-beta2-glycoprotein1 (anti-B2GP1) and the lupus anticoagulant (LA). The LA has been found to interfere with the reagents which are used in the self-testing strips and, consequently, given false high readings in a very small number of cases (4.3%).
Both Roche Diagnostics who make the Coaguchek Xs and Alere who produce INRatio state that testing may be unsuitable for some people who are positive for the LA. Roche Diagnostics issued the following statement in 2010:
There is a warning on the pack inserts for the Coaguchek XS testing strips which states:
“Antiphospholipid antibodies (APA) such as the Lupus Anticoagulant (LA) may falsely prolong coagulation times ie. they may cause false high INR values and false low quick values. Where APA are known to be present, it is imperative that a result be obtained using an APA-insensitive laboratory method for comparison”.
Roche still recommends that the Coaguchek XS is suitable for patients with antiphospholipid antibodies as long as they have existing specialist advice, and understanding and support of their specialist. If a patient has a positive LA result, then Roche recommend that they continue having venous tests alongside the Coaguchek XS tests for three months to make sure the readings are stable.
• What to do if you are positive for the Lupus Anticoagulant
First of all find out whether you tested positive for the lupus anticoagulant – you will be able to find this information from either your GP or the consultant.
If you are LA positive, then you need to point this out to your doctor or anticoagulation clinic when you have the appointment to discuss the possibility of you self-testing with their support.
GPs and anticoagulation clinics often run parallel venous testing alongside your own finger-prick readings in order to establish what the differential is, then draw up an individual management plan based on the comparative INR results. If you are LA positive you must run these parallel tests for three months.
Taking the usual small discrepancy into account, if the results are comparable then it would be safe to self-test. If they are wildly different, then self-testing would not be advised.
• How do I start self monitoring?
1. Go through the list of points to consider before buying a self-testing machine.
2. If you think you meet the criteria and it would improve your quality of life, make an appointment and discuss this with the medical professional who manages your anticoagulation.
3. If they are willing to supervise your training and draw up an INR management plan, you should look into buying the self-testing machine.
4. Plan and implement your training sessions with your supervisor. As well as receiving training and education from your GP or anticoagulation clinic, there is an online e-learning tool that can help teach you how to use the CoaguChek XS machine yourself. As part of the course, you will learn how to carry out a test successfully, the importance of calibrating the machines and learn more about anticoagulation. For more information visit the Coaguchek Academy: coaguchek.com/uk/index....
5. Once you have received the training, and your anticoagulation professional is satisfied that you are capable and comfortable performing the tests yourself and recording them correctly, you will be asked to sign a written contract setting out your individual management plan.
Mary F x
Thanks all of you for helping me understand this. I was wonder Jo and Anne what are your INR ranges. I just feel mine has got so bad. My INR range is 3-4 and for the last three weeks they have been 2.6 2.6 2 and they still have me only on 6mg but this week have put me on clexaine. I have told them I need to be 7 and 8mg but they don't listen. They want me back in a week! It could have dropped again by then! Do they not realise the lower it gets the worse I feel. Everytime I get it checked I am there in the surgury for an hour, not only that but I am loosing time at work every week now is 2 hours lost. Sorry Rant over!
Thans Mary for the advice, I really appreciate it. I would love to know where you find this information.
Fingers crossed that I will be able to get one as I feel like it's taking over my life.
Thanks again guys and girls
MJ x
Roche make the Coaguchek XS and they are available for £300 and you can spread the payments over the year. Alere make one called INRatio but I have never found anyone using it (yet) so can only say that most APSers use the Coaguchek XS.
I have been on the self monitoring INR for about 3 months now. I love it! It lets me keep track on a weekly basis and you know the results instantly. I see my Dr. every 3 months for a check up. He has me as staying in the range of 2-3...I normally am at 2.6/2.8. I had one week (and I admit I ate some things that I shouldn ot have) that put me up to 3.2/3.0...You can take your INR anytime you want to. I redid it a few days later and it was back down to 2.8. I had a Dr. appt. that morning so he wanted to do labs just to make sure we were getting the same results...they came back exactly the same, 2.8. Your Dr. should be referring you to the company for a referral. My insurance covers the total cost of it. It is SUPER easy to do your INR and order supplies when you need them.
Hiya, I got derails of a seller off the Hughes website, I contacted the seller and they told me they were 300.00. The strips used for the test were 127.00 for 30, it would depend how many tests you need to do. I am in the process of buying one. When I get it I am going to continue with the venous tests and test myself and see if there is a difference.
Hope this helps. Lynn
Mine was £300 and I get the strips on presciption. I only self test and regulate my own warfarin. INR does go up and down but it did when I was on Venus test it allows me to test when I notice a dip in my symptoms and increase warfarin accordingly.
This suits me and I like the control that I have. Along side this I am in regular contact with Professor Hunts specialist Nurse if I need advice or support.
Hi I've got a machine, I bought mine from another Hughie so got it cheeper.
I use mine if I feel my inr has gone too low or high,,,,but still have inr tested at docs.
I want to eventually prove to docs they can test me less if I do my own?!
I also get my strips on perscription.
Good luck x
I just went through all the signing up for the monitor. My insurance would not pay. I was going to buy the monitor myself, it would cost $ 2300.00 USD. I expected that price. But then they told me the strips for it were $120.00 for 5 strips!!!! $90.00 with the discount we get. I can't afford that on a regular basis. I thought I might get it anyway with 5 strips so that I can at least go see my friend in Florida, which is on the other side of the United States. I'm in Oregon. I hope you have a way of calculating the dollars. Linda
Thanks for all your comments, they have all been helpful. Linda that's such a lot of money. I don't like to admit it but sometimes I'm thankful for the NHS. I've seen you can buy them on ebay so think I will take a look. The nurse at the INR clinic said she will have a look into this to find out if the strips can be done on prescription. I just don't understand how they can think people can afford this. I don't claim any benefits and work full time and still no-one will help me with these extra costs I can't really afford.
Hi I have been self testing and self dosing on a coaguchek for many years now and would never be without it. I am typing this in South Korea where I am on a business trip and my machine is always in my handbag. Don't have time for INR clinics or their total lack of understanding of Hughes Syndrome, they used to always try and get my INR to 2! One day I asked the Doctor in charge of the clinic what condition I had and for what reason was he setting my INR at 2 and he couldn't answer the question!!!! That was the last INR clinic I went to. My INR is totally unstable and can vary wildly in 24 hours so I would rather be in control and adjust my meds accordingly. After all, it is me that is going to get the stroke if it is not correct, not anyone else!!! And I want to be in control of this as it is my body and my life. I can't recommend Roche machines highly enough and I raised the question of the Patients Forum with Prof Hughes about the test results for LA and he said it wasn't as big a problem as Roche would have you believe.
Love and hugs to all having to cope with this . Xx
Hello i to have been self testing and dosing for many years, so much easy,r but i do forget to test tho ,but as long as i keep eating my warfarin each day should b good , the roche machine is brill, had the old one was bit harder to use but cant fault the xs, cant coment on the other make as i did not no they existed i to get the strips from nhs, but had to buy own machine well worth the credit card bill !!
I have been self monitoring for years. I did it because I lived in a rural location and it was difficult to get to the hospital for the test. I did research online and contacted Phillips Remote Cardiac Services. They in turn sent paperwork to my doctor and usually your insurance pays for the machine rental and supplies. You call phillips with your test results and they contact your doctor and then the doctor contacts you to regulate your blood thinner.
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