coagucheck machine

[panda60]

Saw an advert in today's telegraph for Roche offering coaguchecks which can been paid for in instalments over two years.

Caroline

[rach1081985]

Wow i must check tha out.x

[Beck]

hughes-syndrome.healthunloc...

before purchasing a coagucheck machine, please do adequate research, for your own safety and life....

[Storky]

Wow you just can't leave this alone can you Beck! This IS the research......

When I said it had been approved by NICE in the other thread I was wrong, I had got it mixed up with the other organisation which approves medical devices for the NHS. Its actually been evaluated and approved by the NHS Purchasing and Supply Agencies, Centre for Evidence based purchasing (Formally the Device Evaluation Service of the MHRA (Medicines and Healthcare products Regulatory Agency)).

Finally, you may also like to know that more than a quarter of a million people use Coaguchek Meters worldwide and they are the most clinically and technically researched meters available.

No one has died as a result of one of these machines.

I think that puts everything into perspective!

[Beck]

Hi HughesPatient,

I can't leave it alone, plenty of people have died. I am not saying these machines aren't suitable for people on warfarin or "blood thinners" I am saying as evidence has presented itself, that these machines aren't suitable for patients with APS. The company itself states that, its not me it is THEM it is ROCHE!!! I like to let those know, they may not read the information leaflet themselves and I think that EVERYONE with APS should be aware of what ROCHE says in their leaflet.

Thanks

[panda60 in reply to Beck]

Just out of interest and to put things into perspective.

Do you know

1. What proportion of people with APS self test using these machines?

2. Whether they are used with support from a clinic (I have to sign a contract) who control the dosage? Or who self-dose without appropriate medical advice?

3.How many people have died as a result of using the machines for self testing and what evidence is there that other factors are not involved?

4.Why top consultants from St Thomas' advocate self-testing with coagucheck monitors if there is serious risk involved?

Caroline

[Hidden]

These machines are also FDA approved and CILA waived in the US. It doesn't mean that they are safe for everyone. Clearly it is up to you to read the fine print.

I have called Roche. The machines in the UK are the same as they are in the US. The disclaimers are the same in the strips and it does include all tests that lead to a diagnoses of APS that can cause error - not just the Lupus Anticoagulant.

Please for your own safety do the research. It is not fear mongering when there are Maude Reports from the FDA saying death, serious harm, etc. It is the truth and has been verified by the companies that manufacture such machines.

Peace.

[LesJames]

I have bought one of these and they are great. As has been stated they must be used in conjunction with your warfarin clinic/Doctor. The test strips can be obtained by prescription, but check with your doctor first some are disbelievers.

[Manofmendip]

I have been using the original and the latest model of CoaguChek meter since 2002. I have only twice had trouble: (a) once with the original meter when a faulty batch of strips in 2003 gave false high readings; and (b) after coronary by-pass surgery when the new type of meter gave false high readings (sometimes double the correct INR) for 3 months after surgery. I suffered a bad TIA two days after returning home from surgery. I have found Jeremy Moss of Roche helpful and supportive during both incidents.

[David-Nisbet]

Some of these comments are a bit worrying. I have been considering buying one of these machines and would get support from my anti-coagulant clinic. So far no one else has mentioned any problems and my local clinic uses a coagucheck for people with bad veins

d

[panda60 in reply to David-Nisbet]

I have been using one for nearly three years with no problems. My local inr clinic supports me with this, and they too use coagucheck machines and mine is tested against theirs twice a year. I check regularly when asked by the clinic and am then told what dosage to take. ( At the moment my inr is unstable so am saved endless trips to my surgery.. Self-testing was suggested by the consultant at St Thomas,

Hope that helps

Caroline

[Hidden in reply to David-Nisbet]

I had to bring the information to my coumadin clinic team, they were not aware of the possible problem for APS patients either! But once the pharmacy tech did her research we came up with a workable plan. I dont home test for the reasons stated above, I work with a coumadin team at our university clinic.

[Hidden]

None of the big APS researchers in the US are promoting the use of these machines on APS patients. Dr. Hughes is the only one that I know of who is actively promoting their use on APS patients.

No one is questioning the rest of the people that use the machines. Though there are groups finding problems with them as well.

If they were safe for APS patients, why the disclaimer in the literature from all the manufactures? (Yes, there is more than Roche out there. Maybe not approved in the UK but they are in the US. ALL of them have the disclaimers.) Some even make you sign a document saying you know these machines are not accurate with APS and that you waive all liability to the company, et al. They didn't put that there for just one or two incidents.

You realize the regent is a phospholipid, right?

Peace.

[Hidden]

All the doctors at St Thomas' Hospital recommend self-testing machines for patients who have tested positive for either the anticardiolipin and/or the anti-beta2-glycoprotein1.

I'm not sure why you keep referring to Graham Hughes when he retired from the National Health Service over five years ago, JaneDoe? I can tell you now that Prof Beverley Hunt (who also heads up her own excellent charity Lifeblood and does a lot of lobbying which has changed policies to avoid DVT in UK hospitals), Dr David D'Cruz and Dr Rachel Davies who head up the team at St Thomas' in London will advise patients, particularly those with very busy lives, to consider using a self testing machine.

As explained before on another thread, there is a caveat, which Roche point out, for people who test positive for the lupus anticoagulant. They say it must be very carefully monitored for the first six months. I know of many patients who are LA positive who have no trouble with their machines, but it is very wise to take this precaution of venous samples to be compared with the machine for some time.

The main thing to consider before buying one in the UK (sorry but I can't comment on other countries as we all have different health care systems) is that your GP will supply the strips necessary for the machine. If you can't get them on prescription, they cost an absolute fortune and unless you are incredibly well-off, it would not be worth buying the machine.

ManofMendip - I'm glad to hear you had a good experience with Jeremy Moss. He has now been promoted to manage the whole European sector so Roche has Point of Care Director, Allison Rossiter in case you need a contact in the future.

The Coaguchek is not the only self testing machine on the market, there is another manufactured by Alere called INRatio. However, as yet, our charity doesn't have any feedback from users on this product but I am sure they would be just as safe.

[Storky]

Beck - If the machines were not suitable to be used with APS Roche would not sell you one. They might write a disclaimer, most companies do about their products, but if they had specific evidence that made them unsuitable for a specific condition they would not sell them to that group of patient.

Companies do not flout law suits. If they knowingly sold equipment that they knew was dangerous or unsuitable to APS patients they would be sued no matter the disclaimer.

I ask again what evidence do you have that this machine has killed any APS patient or somebody has died as a direct result or a failure of this machine? If you don't have any I suggest you stop this campaign. Just because something bad happened to you which you are blaming on this machine (which I doubt you can prove was the machines fault) you now feel its a bad machine for everyone. Peoples situations are all different.

No one can use them without the strict co=operation of their doctor and co-ag clinic and will be trained to use them. No one will be forced to use them or be suggested to use them if they are unsuitable for their use.

EVERYTHING that you use has a risk no matter what it is, including medications. We all have to weigh up the benefits against those written in the leaflets. Its called balancing.

If this machine can bring added benefit to your life, is adequately monitored and is run in conjunction with the doctor and clinic that you attend then there is no reason to believe there is any reason not to use it. Most people know when they have readings that are suspicious and have symptoms, the sensible thing to do is to act on it and insist that things are checked out.

I don't use one of these machines but given the chance I would because I have read the literature, weighed up the options and made my OWN decision.

Additionally, I also trust the judgement of a world renowned Hospital, Clinic and Consultant who not only has saved the lives of many many patients but would do nothing to risk their lives either.

[paddyandlin]

Hi all,

Yet again this disscussion on these machines has become a hot topic and people are treading a fine line. I do agree that people should have a say but also you need to understand that some of your information will be a little over the top and can be seen as scare mongering as we have members that have and are using these machines successfull.

This is the second warning as we have already had this issue of being abusive to memebers and scare tactics and i agreed to leave the post up as long as the bulling stopped!

SO LET ME MAKE IT AS CLEAR AS POSSIBLE!

If any memeber is caught being abusive or attacking or scare mongering other members it will NOT !!!!! be accepted if this continues and i continue to get complaints the memeber/s involve will be suspended and then deleted from this group.

People have a choice what they do not have is the write to bully or attack someone so it stops here!!!!!!

Paddy

HSF HU Moderator

[Beck]

I have never said anything bad has happened to me because of these machines. In fact, I too was looking at buying one, but after researching the internet, and coming across Roche's and other companies own disclaimers, I decided I would not waste my money on a machine with so many bad reviews from APS suffers and their left behind devastated children.

I am not bullying at all, I am having my say, it is all the machine pushers who are being bullies.

Good luck to you all, I hope the one thing that I want, which is people to do the research before buying the machine, happens.

[gingersmum in reply to Beck]

Beck,

I find your comments patronishing and arrogent, what do you think people with APS are, helpless pawns of machine pushers?.

Everone I know who has used or thought of using a self testing machine has reserched it extensively, and your assumptions that our community is full of helpless guilable infants is extremelly annoying, I have a better opinion of people with APS than you, and know that we are a huge community of intelliegent thoughtful people, ( who happen to have serious illnessnes not lack of judgement) and who are NOT in the sway of some machine pusher.

You are in denial about being a bully too I have to say, please look at yourself a little before sending out emotive aggresive lies

[Manofmendip]

I have, as I said earlier this week, had two instances of problems with CoaguChek machines: one the original model that required regular calibration tests with control phials, when there was a faulty batch of test strips; and once with the newer machine where it was not accurate and gave false high readings for about three months post cardiac bypass surgery. In both instances I had a return of 'Hughes' symptoms, including in the second instance a TIA. However, other than these two, isolated incidents, I have had no difficulties with the accuracy of the machines for nine years. Roche and Jeremy Moss have always been very helpful and have even sent a replacement machine, in case my one had developed a fault. They asked me to do a simultaneous test on both machines at my GP's surgery, so that the practice sister could do a syringe blood draw and send some to the lab and put some on the test strips of both machines. The results were that the two machines were within 0.1 of each other and within 0.2 to 0.3 of the lab test. Jeremy Moss always points out to me that any form of INR testing is likely to be less exact with high INR readings, i.e. above say 3.5. I have a target INR of 4.0 so I fall into that category. My INR has always been unstable and I would not be able to control it without home testing every day or every other day; my GP is fully supportive and allows me complete carte blanche to do my own testing and dose adjustment.

What is an important point, brought home to me by my haematologist, is that it is not desirable to micro manage INR levels. Changes of warfaring dose can take several days to have a stable effect in changing INR and therefore you can easily end up chasing your tail with over and under corrections by not allowing changes in warfarin dose a couple of days or so to have an effect and for that effect to stabilse. He has advised me only to change dose if the INR movement is showing a definate trend upwards or downwards, not just because one day's INR reading has changed for the previous day.

I hope that I am being of some help to other sufferers on here.

[Moonlightonly]

I have 1 thru Phillips my insurance pays 4 everything, ck into that first be4 u buy 1,Tina

[Bevi]

APS by its very nature is an unstable illness, by testing weekly at home you get a bit of your life back. Im sure its been a life saver for me, as just last week my reading was 3.7 so in range. Then this week I woke with a throbbing head and pains in my legs......my hubby brought machine over to me in my bed and the result was a reading of 1.2!!!!! I was able to give myself a Clexane injection there and then to protect me and increased my warfarin dose straight away.

This avoided a possible DVT or worse, and a day spent in hospital. I just contacted my Haematologist to let them know and get advice on when to stop clexane and best way to increase my dose to get inr back to target/in range.

For the most part it has been great to use the Coagucheck so I can adjust my dose at home without taking up valuable resources of the already overworked NHS. We have APS, and as another patient stated, this does not mean we have no minds of our own. We opt to use these machines after research and consultation with our healthcare proffessionals. They are an essential tool for me living in a rural location. As long as you are aware of the fact that a change in dose takes upto 48 hours to take effect on your INR. Nurses at the clinic i used to attend were trying to keep my inr between 3 and 4, often when it bounced from 2 to 5, the realised after a couple of years I knew my own body better than they did anyway and I adjusted as I felt was right for me.

Hope I have been of some help.