Sticky Blood-Hughes Syndrome Support

Home monitor for APS patients chasing clarification

Hi all,

Question on CoaguChek (Roche). I am investigating this home monitoring INR device. My local hospital clinic refused to use the device because I have APS . Note when I was diagnosed with APS I was negative for the LA blood test. I have contacted APS Support UK who have confirmation from Roche that APS uses can use CoaguChek unit. However when I rang Roche , they said they do not recommend monitor for APS patients. APS Support UK are investigating I will update .

I had a stroke at the beginning of Feburary and have been put on Warfarin. So very new on Warfarin.

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I live in Sweden and have used a CoaguChekXS monitor for 6 years now.

I am also triplepositive and Lupus Anticoagulant positive. There is a difference between the vein-draw and the finger-draw but always the same difference and then it is ok.

Best wishes and Good Luck from a user

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Hi I am positive for all three, the hospital have just recently agreed to let me use machine ( at home) but still have to have veinous draw test every week too. ( my INR is never stable) My results vary sometimes finger prick test is .4 below or .4 above veinous test results, sometimes results are identical to veinous test.. the hospital did make me do 3 months of comparable tests before they agreed I could use machine. Roche also said to me it wasn’t recommended for APS but if I had approval by specialists it was okay to use.

Hope this helps & you get some clarification soon.

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Thanks Lind8 I will update when status changes

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Hi Lure2, thanks for your response. I will chase for Clarification from Roche company.

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Maybe your doc would let you use injectable low molecular weight heparin (LMWH); then you wouldn’t have to test at all!

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Hi, i support daily injections , would be an option , but I had brushing after taking heparin for 7 days. Do you use heparin daily?

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I use it every twelve hours but like the freedom it gives me

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My local anticoagulation clinic based at the Hospital only tests using coagucheck machines and were completely flummoxed when I asked for vein tests to compare the difference between the vein test and finger prick, apparently they'd never heard of such a thing.

If you've only just started Warfarin you need a consistent dose to be able to stabilise your Inr, it sometimes takes a while to stabilise but if you maintain your eating and drinking habits you should be fine.

What is your target Inr?

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Do you mean that you have never tested the difference between the veindraw at the hospital and the machine-draw at home? Have I misunderstood?

I know when I started Warfarin my GP only used finger-draws. Lucky enough my hospital took over and I had to do a lof of doubletests to begin with to know the difference between the two. It is a big difference for me being Lupus Anticoagulant.

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No I said the Hospital clinic had never heard of the need for the comparison test. I had to get blood test forms from my Gp and did my own test at the same time.

My vein test is a consistent 1.0 above the finger prick, so if finger prick is 3.4 vein will be 4.4

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So you do not do a veintest at a lab which can send it away very fast? Bloodtests forms from you GP.......I do not understand.

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Hi , have been on Warfain for3weeks. My range is 2 to 3 . Currently on 12mg will have vein blood test on Wednesday.

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Do you have a diagnose of APS? What symptoms do you have as an INR between 2.0 - 3.0 can be too low for us with his illness.

If you do not have our illness APS, there should be no problem to get a CoaguChekXS to do selftesting at home I guess.

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Hi, I too take Warfarin but I've had multiple strokes. As Lure 2 says an Inr of 2-3 is considered too low for Aps suffers, most have 3-4 but I have to keep mine at 4.5. I only take 3mg of Warfarin. I think you will have to purchase your own coagucheck in the UK I certainly did and most of us have a battle to get the test strips on prescription. My specialist was surprised my Gp still prescribes mine as very few do.

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Thanks Lure2 and Tucson for your input.

I was diagnosed with APS after a clot in the eye. The hospital tested the 2 blood tests Anticardiolipin antibodies (aCL) and Lupus anticoagulant (LA) but were negative. After a few months saw a consultant who tested the 2 again plus Anti-beta2-glycoprotein-1 (anti-B2GP1). Anti- B2GP1 was very high and all tested 12 weeks, again Anti- B2GP1 very high. Consultant was not sure to put be on warfarin or Clopidogrel. As I was relatively young (2014. 49years) , good blood pressure and not too over weight. So was on clopidogrel till the stroke early Feb 2018.

I will be purchasing monitor for my personal use , and continue vein blood test until hospital clinic updates processes and have confirmation from Roche. Roche has told Luton and Dunstable hospital that if APS patient then the home monitor should not be used.

I understand that my INR target of 2-3 maybe too low after reading your input and others. The coagulation team have given my target and they understand I have APS...... Sorry for the long response 😀

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I was 53 in Jan of 2015 when I had my stroke affecting my left side. Prior to that I wasn’t aware I had APS. When I began on warfarin they wanted my range between 2-3 and was on like 15+ of warfarin a day.

I didn’t have any new symptoms. I was also very afraid of every morsel of food I put in my mouth, so afraid I ended up losing a significant amount of weight.

I spoke with my hematologist about this and asked if I could be put on lovenox, she was agreeable and I have been very content since. I eat what I want when I want and am no longer afraid, there is no need to check bloodwork as it is based on my weight. I just make sure my weight doesn’t fluctuate. So far, so good for me. Please PM me if I can answer anything for you.

I did use a coagucheck machine after side by side testing with the vein at the lab and finger sticking myself immediately after the vein draw for a couple of months, when I was on warfarin. I am lupus anticoagulant positive and it was not a problem.

In fact I am triple positive (for all the 3 blood tests) for APS.

“Kellyintexas ” can help you regarding strips- PM her. Best wishes, Cindy in Nj USA

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Only if she is American I think(?)...

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Hmmmm...I’ll have to check on this.

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Oops!

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Yes I do comparison tests.

The hospital takes the blood and tests it on the premises.

You need the form from the Gp to get the blood test done.

The hospital doesn't think the test is necessary.

I know what I'm doing and why I'm doing it even if the Hospital is clueless.

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Been using Coaguchek for ten years in the UK with no issues. Haematologist is very happy to support it. GP is happy to prescribe the strips. If the GP won't prescribe the strips than you can buy them privately for about £130 for a year's supply, which isn't too bad considering it will allow you to live a more or less normal life, in terms of travel and work.

If your haematologist won't use it then it might be worth finding one who will. I don't know where you are based in the UK, but you could get referred to Haematology in at the University Hospital, Birmingham. It's a tertiary referral centre, so your GP can make the referral. Initially, it would be a pain as you'd need a number of initial visits over a two week period, but then you'd only see them once a year, and send and receive all your results and dosing by email or phone (your choice). It would also mean you'd get a leading haematologist with both interesting and experience of APS.

Otherwise, if Birmingham is too far, get your GP to refer you to a more local haematologist, with an interest in APS. See the list here:

assets.healthunlocked.com/c...

My very brief experience, before I got my machine, of being tested for INR at my GPs was very bad, very slow, and they just didn't have the experience to make the right size adjustments to warfarin for me to be stable.

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One other thing UK potential home testers might be interested in is a recent trial being done at the University Hospital in Birmingham. Last time I went for a venous draw, they tested me four times:

1. With my Coagucheck machine.

2. With their larger Coagucheck machine.

3. A venous draw.

4. A new Siemens home testing machine.

The Haematology Dept were running a study on the accuracy of Siemens over Roche, partly because the Siemens machines are cheaper. I don't yet know what the results are.

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Hi Kj, i am in UK Dunstable. Thanks for you input as well. As per previous input the hosital coagulation team would not allow APS patients to use monitor. I am going to my GP tomorrow to discuss if I can start driving again. Hopefully I can talk about warfarin management. Unfortunately the receptionist advised that warfarin management group is full😞. I currently do not have a person managing APS. Previously when I asked GP if I need APS specialist , it was not needed as had 4 years of no events . Now things have changed with a stroke effecting right side.

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£130 ? I think it's £140 and that will buy 48 strips, most of us test twice a week so that's not a years worth. My Gp prescribes enough for twice weekly tests but if I want or need to test more frequently I have to buy my own. My specialist at st Thomas' supports home testing but it's the Gp who has to prescribe, the specialist can only ask that they do. I manage my own testing and set my own dose, only email my results to the clinic once a fortnight but they have no input other than that. It's a bit early for that for you maximus but once your Inr is stable it's an absolute doddle. I don't want to frighten you but I had a third stroke after a gap of 4 years and had an Inr of 4 at the time, I thought I was free and clear too till that happened.

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Hi Tucson, thanks for your input, scary that you are on warfarin with INR 4. I assumed warfarin would stop clots if in range..... On the clinic not inputting on the results, i assumed dependant on results the clinic alters dose. I assume your read is stable.... How do you get yellow book or the new warfarin yellow slip ( looks like an old pay slip) so that you can get warfarin from pharmcist. I need to have prescription and proof of recent test.

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I alter my own dose as and when required, quite a few self manage on here. When I need a new yellow book, I ask for one in my email and they pop a few in the post to me. I get my warfarin on repeat prescription from my gp. I give him a photocopy of my yellow book, show the front page and current page of readings and he prescribes what I ask for. Usually 3mg, 1mg and 0.5mg. I've always been fairly stable but much more so since self testing and self managing. These days I never skip a dose and my adjustments are usually by 0.5mg only whereas when the clinic adjusted I would swing betwen skipping a dose or reducing by several mg for several days then be too low and need to increase by several mg again. It was just see sawing up and down.

The stroke with an Inr of 4 was unexpected but was a lot milder than the previous stroke, no doubt due to being on Warfarin. The hardest part was convincing the hospital it ha happened, they only believed me after the Mri confirmed it.

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You don't necessarily need a yellow book if you are self-testing. I've never had one. Partly because the self-testing machine stores the results, as does the anti-coag clinic, as do the emails sent in with the results.

A chemist will ask me for my yellow book, but once I tell them I self-test I've never had a problem with any of them dispensing warfarin, whether they be a large store like Boots or a local chemist -- I don't have a regular chemist that I use. I just go into whichever one is handy.

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Hi Tuscon and Kjkjkhh thanks for ŷour updates.

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My hematologist only uses the INR machine but I know there are mixed reviews on the accuracy vs regular blood test. I will likely get the machine too. So far I have had trouble getting in range for several months. I am too low. Maybe you should do both so you can check often but also get blood work to make sure it's accurate since you had a stroke.

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Has your Hematologist (a Specialist of APS?) done doubletests (a vein-test at the lab and fingerprick with the machine) to find out how much the difference is and if it is the same difference all the time. I think you said you were triplepositive incl Lupus Anticoagulant.

What does the Hematologist do when you are too low? How low are you? Does she wants you to test more often and increase the Warfarin dose?

Kerstin

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Hi rottiro1, that for you input,

Most likely I will get monitor for personal use. It was confusing when I asked Roche technical , they said if you have APS then home machines not recommended. The APS support group have just been given by Roche a new inrange coagucheck home monitor. Just like Roche manufacture to clarify and have a consistance answer to APS sufferers .

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Maximus, I suggest you ask your gp to refer you to Beverley Hunt at st Thomas’s

It’s allowed

She will sort out your range and support you trying coaguchek

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Hi the feedback from our members will help you make a decision and shortly our own charity website will be ready with all the relevant advice. When medical staff do not fully understand the use of this machine in relation to our disease cold feet sometimes happen, however if you are doing a percentage of draws at the clinic alongside self testing, normally they get the hang of it as much as you would do. MaryF

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Hello

I'm sorry to hear you have been unwell I have been on warfarin for 2 months I also have positive APS since 2014

My clinic in Northampton UK recommend the home testing with a Roche device compatible with the one in the clinic as They only take capillary samples

They took a reading off my device and one off theirs and they were identical I just have to repeat this in 6 months time

It's so brilliant The machine cost me £299 and my GP provides a prescription for lancets and test strips and provides sharps disposal too

I can go out and about as I please , just phoning in my results to retrieve my doses for the next days or weeks ahead depending on the results

Highly recommended in my situation

Good luck J

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Hi all , thanks again for your great input. It has helped me understand my options , eventhough hospital clinic will not allow self monitor machines for APS patients . I want Roche staff to understand APS ..... I would advise anyone with APS and suffering, to share issues on this forum . It does help to share will fellow APS patients . So dont think you are alone . It has helped me 😀

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Just to add another data point / opinion for you:

I have been on warfarin for over two years and self testing with coaguchek for over eighteen months. I had to buy the machine and the strips due to the way anticoagulation service is funded in my area, but if I did get the strips the hospital would only provide one every two weeks. I test once a week at least, more often if things (meds, illness etc.) are changing, that is for my peace of mind.

With APS, before self testing you need a period of regular comparison tests done at a clinic - blood draw and finger prick done at same time. Once on self testing a comparison every few months is normal I think - but I can get one done any time e.g. if I get an odd or unexpected result. You should have a consistent difference between the two results, and not too large - but there are no actual guidelines or standards on numbers for what is "too large" or how much variability is allowed. My area anticoagulation service says they are currently "doing a research project to establish guidelines" on this, a more cynical interpretation is "we don't have a clue, we're making it up as we go along" :-)

All of the above _also_ applies if they are using point-of-care testing (i.e. finger prick) in the clinic (as my area does). If so, they _should_ automatically do venous comparison tests, but in my case at the beginning I had to tell them that they needed to do it.

If you are allowed to use finger-prick testing in clinic then you should be allowed to at home, the important bits of the machines are _exactly_ the same (the NHS ones have extra gadgets for barcode scanning and network connections) and use the same test strips. Or at least they are if you can get a Coaguchek XS, Roche now have a new home machine called INRange which apparently is _not_ the same, as the test strips are different. They _might_ also have a different policy on APS patient usage with the new machine which may explain the message you got from them.

In terms of INR range, I am also on 2-3 following stroke and APS diagnosis. There are a lot of opinions on "correct" range after stroke, and not a lot of evidence. The UK haematology guidelines say 2-3, based on the only clinical trials (that I have found) that showed 3-4 is no better. Some APS specialists will say 3-4. The international expert guidelines (I did have them somewhere, but not sure where...) say 3-4 but also say that there is no agreement on this and that the evidence doesn't even meet the lowest level of grading. My own doctors did not even agree on my range! I went with 2-3 option after doing my own research, I also know which of my doctors to go back to if I ever want it raised!

Every case is different however, and all the above discussion on ranges is in respect of preventing further clots. If you have day-to-day symptoms that vary with INR (many here do, I don't), none of that applies and you may want to find a specialist who will sort out the right INR to treat your symptoms. You may also want to push for 3-4 simply because (it sounds like) you have clotted (stroke) while on clopidogrel (makes you different to me). You may well need a referral to a specialist, to get this as it will need to be someone who will go around the guidelines and probably around local hospital trust prescribing policy as well.

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Hi Ray46 thanks for your detailed input. The target range for INR can vary dependant on who you see in the UK . Thanks for that information,on the new INRange home monitor , I will purchase one as a backup for my own use and continue with venous (blood vein test) . I may review further down the line.

FYI only been on Warfain for 3 weeks and yesterday had blood in urine , which just looked like blood. I assumed it must be warfain , but clinic tested and INR was 3.1. So had to make an emergency appointment to see GP last evening. I will provide urine sample this morning .... If It happened at weekend I could use home monitor as just a guide line to decide what action to take. I will push Roche to have a clear answer of Their INRange devise for APS patients as they have sent this unit to APS support group UK. But their sales tell me their monitors are not suitable for APS. Once I have any status change I will update in this thread , it could be a few weeks 😎

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Hi all, just to advise a rang Roche again and this time the rep explained about parallel venus blood testing to check results but was not saying, if you have APS you should not use Coagucheck monitor. I have purchased unit on interest free monthly payments.Roche check credit history , employment etc. note if on warfarin long term you do not pay vat for this unit.

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