Does anyone use an INR machine at home? - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Does anyone use an INR machine at home?

Yols
Yols

Am thinking about getting an INR machine as my veins are getting damaged from the numerous weekly blood tests but the machines are so expensive! Can anyone give me some advice please?

24 Replies
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Hi Yols

I used two different versions of CoaguChek machine for 10 years and, apart from for three months after open heasrt surger when the machine was very inaccurate, I had no trouble.

I have primary APS but I have read reports on here that there are issues usign these devices if the patient has SLE, so please check before buying one.

Best regards.

Dave

I too have wondered about getting one of these machines. I asked at my local anti coag unit when they had the machines for sale but was told that having lupus made me unsuitable.

However more recently there have been occasions where the anti coag nurses have used these test machines on me themselves. So I guess it may be more of them not wanting to take overall responsibility for handing over the checking to a patient.

I do however have a question that someone may be able to answer. I have Raynauds and especially in cold months pricking fingers could potentially increase the chances of infection and ulceration. Its called a fingerprick test. But does it have to be a fingerprick?

Hidden
Hidden in reply to overnighthearingloss

Hi

I too have Raynaud's and I never had a problem with the finger prick machine. I haven't used it recently as I changed to Clexane but the more recent CoaguChek machines are terrific and need only a very small amount of blood. Ask your doctor or the company that makes them (I think that's Roche) but it's never caused me any problems.

Tx

Hi, I have just bought a coagucheck xs machine and plan to self test and self dose, just waiting for the self dose information before I can be independant from the doctors for INR testing. They probably want to see tests run in parallel before they get some confidence in your ability....cant wait for the independance.....

Hidden
Hidden

One word of warning at the moment:

because the government has insisted Clinical Commissioning Groups to take over from Primary Care Trusts, there is no longer any guarantee you will get the testing strips on prescription.

This means that your GP may tell you that you now have to buy the strips yourself. They cost around £65 per box of 24 which means the price is prohibitive for some people.

Sadly, our NHS has now been severely compromised and a level of private care has now been brought in. Let's just watch the fiasco unfold for the NHS Direct 111 phone line ... bbc.co.uk/news/health-22350814

Thank you all very much - you have been so helpful! Having read the fact sheet it refers to being able to pay £13 monthly for the machine, how would I go about this? Who do I contact to enquire?

Hidden
Hidden

Hi Yols - can you contact me directly at the charity regarding this please:

kate.hindle@hughes-syndrome.org

Thank you :)

Hidden
Hidden

Oo er - diabolical isn't it. The most worrying side of the private healthcare is companies like Virgin Care taking over: channel4.com/programmes/dis... - we are not 'customers' but patients! No profit = no care ...

MaryF
MaryFAdministrator in reply to Hidden

Yes look at the mess our trains are in... we are not customers but passengers etc etc. Mary F x

Dear Yols, I just wanted to share my experience with you. I have Hughes Syndrome and need to keep my INR between 3.7 and 4.3. It was recommended I buy a machine which I did. At first my machine readings and my lab readings were the same. I then started doing lab tests every second week instead of weekly, then monthly. After 3 months I noticed my machine reading started to vary from the lab reading with an initial difference of 1.3 then 1.8 then 2.2. I did a machine test just before Easter weekend last year and within 2min my lab test. My machine reading came up as 7.8. I could only receive my lab test result after the long weekend. I was not too concerned and subtracted 2 from the 7.8 and then adjusted my Warfarin. Unbeknown to me my actual lab result was 3.4 and at the end of 4 days my INR had dropped to 1.4 however the machine reading was above 3. I developed a clot and was very ill. I contacted Roche and was told I should never have used the machine as my antibodies change constantly throughout the day. Roche said it is not recommended for Hughes Syndrome. I requested a new machine and they refused and insisted I return the machine.Roche refunded my money immediately and sent me a package with postage so that I could return the machine even though I would have preferred to exchange for another, they would not. So please be aware it does not work for everyone. Yvette

Hidden
Hidden

Hi there,

Are you Lupus Anticoagulant? I am and i have a machine since 1 year back. I take a cheque every morning. There is a descrepence between my machine-result and the vein lab result.

It can be up to 1,9 (only once and then with high INR) Usually 0,8 - 1.0. It is important to do the labvein cheque within 3 - 4 hours. First I did it every week, then every two week and now last time it was 1 month since I took a lab test. I have a nurse to talk to and doctors if I need.

I can see and notise when my INR is going up and then I eat a little more broccoly or some other K- vitamin vegetable. I very seldom change my tablet intake. One week ago I had forgotten to take my tablets in the evening. I took 1 1/2 dose of warfarin the day after. The day after I had forgotten to take my tablets I had 4.2 in the morning (that is very good) so I thought it would be allright but in the evening as i took an extra cheque I had 2.2. I went to the hospital and then my INR was 2.0. The discrepense was perhaps so small because the INR was very low.

So you must not forget. Otherwise I love my Coaguecheque-machine. Life would be more difficult for me without it.

hope I have helped you perhaps. Kerstin

I have APS and PSD so two blood clotting illnesses, there has been a lot of differences of opinions on whether APS suffers should use the Roche machines, I think it is important to have venous tests to ensure your machine is in line with the venuous INR result, that said I have been using a ROCHE machine of my own for 15 years, I am fully aware that it may not be accurate, but them my INR clinic who use a different finger prick machine, tell me no blood test is totally accurate with APS and each test / type of test, tests different levels and stages of the clotting process. I am NOT recommending anyone use one, without talking to thier Doctor or Specialists as I would not want to be responisble for anyone using one and becoming ill. I am merely expressing my own experiences.

I just read this and am confused, I tested postive to the LA test and have Hughes APS which I know is the same, so wouldn't everyone who has APS/Hughes be postive to the LA test ?

No, some of us test positive for the anticardiolipin antibodies for APS, and not the lupus antibodies.

Hidden
Hidden

Hi there,

Of course I also only express my own experiences. We were not sure if I could use a machine as I am Lupus Anticoagulant. But what is my alternative. I am very careful and my doctor knows me since several years. I have tested one year and have wonderful backup from my hospital. I must be on warfarin for ever.

But of course you must talk to the doctors. You must learn how to use the machine. For me personally the Roche machine has made my life easier .I agree that no blood test is accurate with APS.

Kerstin

I have been self testing for 9 years and have been extremely happy. It's 100 miles round trip just to have an INR check. Annually my doctor has me test at home and then test at her office and it's always been right on. I think it, like everything else, is dependent on the patient, confidence level and their doctor's advice.

Thank you for taking time to comment APSnotfab. Perhaps I did not express myself all that well. I did do parallel testing for 3 months and all was fine. I noticed the change over a period of 10 days as I was testing more frequently. Your point is valid,however for anyone new as I was,it is all very overwhelming at first as you are coping with various symptoms as well as effects of medication and test results. I was just sharing my experience as it was very real to me. I am sure a number of people do benefit from the machine. I am just sad that I am not one of them as it gave me confidence and comfort whilst having one.

Thank you for all your advice, you have all be very helpful. I am Lupus Anticoagulant, have APS and raynauds. I have had difficulty with my dentist wanting to do a filling but needing INR check and then cannot always get an appointment at my GPs surgery to coincide. Also the INR blood test always needs to be done in the morning at my doctor's and this means I have to take time off work, so my work get cheesed off with me!! I can't win. Am on warfarin for life and my veins are already getting damaged. I am 44 so have many more years for my veins to last!!! Having a machine for INR checks would be a life changer for me. I have decided to go see my GP to discuss the machine and whether I could get the strips on prescription. Its great to hear so many of you have been using the machine with great success, I guess the key to success is getting regular checks with the clinic, especially for three months at the outset.

Hi, I'm a newby to this site but need to way in on this. I was at Swedish Hospital in Denver, in Nov of 2011, to have a spontaneous bleed stopped. While I was there, I was very fortunate that they sent a neurologist to see me, who is an expert in Hughes Syndrome. He even teaches the doctors at the hospital about Hughes. He will not let me have a finger-stick for my INR, because he said the nature of Hughes makes the results from a finger-stick machine unreliable. I had also found that out at our lab. They would take a blood draw and finger-stick each time for 4 times, and each time, for me, they were different. So I now have blood draws every time for an accurate INR.

I am so thankful to have found this website and group. I really do need support in my walk with this blood disease.

Monica

I've got one at home and would recommend to anyone. Best thing I ever did. It took me a while to get my GP on side and a while to get things going but so worth it. Saves time going to the docs and lets you control your own life.

MJ xx

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Hidden

Hi all,

If you are Lupus Anticoagulant it is not so easy. And also if you have APS. We are all different and APS is not so easy to calm down. It has its own behavior. Constancy is very very important. But do not give up. Ask your doctor who knows you. It is important to have some help from the coagulation clinic.

I am Lupus Anticoagulant and I have used a machine for 1 year. There is a discrepance between the vein lab result and my machine and the discrepance changes. (Hope you understand my English because this is important.) For me it is a vider gap if the INR is high on my machine in comparison with the lab result.They always take a vein test. It is the vein result that is reliable..Even if you have Lupus Anticoaculant most patients have the same value between machineresult and labresult, but my changes. Bad luck.

Anyway I feel confortable with the machine. The alternative would be much worse.

Kerstin

Hi I 2 have used my blood testing machine now 4 3yrs. with no problems.My insurance has payed 4 all of my supplies.My veins r happy,the lab is happy they get tired of sticking me all the time over and over,LOL,LOL,and my dr. is happy 2 as there has been no problems with the results or me staying in contact with him on my results,and I am am happy with it 2.Look into your dr.office 4 information or contact your insurance,hope this helps,

I must weigh in on this subject with my experience... I did the research, listened to all of your advice, etc. and since I am NOT lupus anticoagulant positive, I made the big decision two months ago and paid for my machine myself to test in between my lab blood draws since my coag clinic said "No" when I asked if I could use one.

I was so excited when I received it since it is a life style game changer, especially since I travel for extended periods of time and, well, would just like to be in control of my own blood! There are those anxious times when you see bruising, or light pink urine, and want to know NOW if your INR is too high. Waiting 6 weeks for blood draws is not acceptable. It might be out of range multiple times during those weeks. Statistics show self monitoring has had better results.

Well, the first 4 days of self testing, 4 readings were all <8.0, the highest the machine goes, at the same time the lab draw was 2.7

With sadness, RIP to my $1100. No refunds on opened boxes.

So there are some of us with anticardiolipin antibodies that can't use it either.

I remember traveling, needed an INR, went to a small clinic in a rural area who had a finger prick machine. They notified my lab in California of my 8.0 reading... my clinic then phoned me late that night to go to the ER for Vitamin K. (I hate it when labs have to contact your doctor first and won't tell you your own reading. Ridiculous!)

I didn't go to the ER and just refrained from warfarin for a couple of days until getting to the next city where a blood draw showed it dropped to 4.2

Who knows what it really was during those few days.

And who knows what it is now, as I have another 4 weeks to the next draw. If I'm in town.

I just got to make sure to keep my diet consistent and my wine intake limited. ;-(

And when someone had written what the Roche insert states for "Test limitations and known interferences," I probably misread it as saying it's just not for LA, wishfully thinking that us anticardiolipin people would not have trouble with using it.

Here it is again, stated by Roche:

"Anti-phospholipid antibodies (APA) such as Lupus antibodies (LA) may falsely prolong coagulation times, i.e. 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."

I thought I'd try it again today... another <8.0

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