Self-Testing with Coagucheck XS???

[Danimgw]

Hi

I received this message from Roche Coaguchek when I asked them if their new machine was more accurate with antiphospholipid patients.

"We advise all patients with Anti-phospholipid Syndrome that the meter may not be suitable for self-testing, due to the nature of the condition and method of testing. If you do decide to self-test, it should be with the full support and awareness of your health care professional. In the pack insert provided with the test strips, there is information advising patients with APS that the product not be suitable for them as it may give falsely high INR values, where APS is known to be present. It is imperative that the result be obtained using a APS sensitive laboratory method for comparison.

With regard to the thromboplastin, Roche uses a type of recombinant human thromboplastin 1.5u which gives a consistent ISI (International Sensitivity Index) of 1.0 which is the ideal score for accuracy as recommended by the World Health Organisation and the British Society for Haematology. Therefore Roche is not currently using or having future plans to use different types of thromboplastins. I hope this information is of help to you. We wish you the best of luck for the future, and if you have any further questions, please do not hesitate to ask."

[taffydaffy]

Hi all

an APLS friend in the states told me that the F.D.A wont allow roche machines to test Antiphospholipid Syndrome if it's not good enough for America why is it used in the U.K

[paddyandlin]

Dear all,

I am going to stop this Thread in its tracks as this topic previously has caused a number of upsetting posts before..

I am BANNING any more comments on this post . Members using or not using these machines have a very strong opinion on both sides as to whether you should or should not use it.

All i would say is you are entittled to your own opinion on this topic, but it has been disscussed before one side says you can use the machine and as long as you use it with a doctors reviewing your results and taking blood samples to review against it is fine. Others say this machine does not work and you are better to carry on having blood tests by your doctor or clinic and if you want the information about previous conversations on this subject please look at previous blogs.

I am sorry if you feel this is to strong but this subject has caused to much trouble and upset on the forum before so the above is the basics of the arguments for and against the choices is yours.

regards

Paddy

[Danimgw]

Hi Paddy

This blog is to create awareness, give advice and help with our experience. We are all APS/Lupus patients.

You can't stop some threads cause they upset people (it is against freedom of speech).

Roche labs say that Coagucheck machines may not be suitable for APS patients. These machines are widely used by GP's surgeries and doctors consent.

I went to my doctors surgery to test my INR and they used a coagucheck machine. The machine gave the wrong readings and I was having the wrong doses. Eventually I had a massive heart attack because one clot decided to visit one of my arteries. Before that I had a severe stroke that left me with problems.

I just want to bring awareness to this issue. If in the States and in Spain coagucheck is not allowed with people with anthiphopholipid syndrome why don't we bring this awareness to the table.

I just don't want other APS patients to have Strokes, Heart attacks, DVT ect. due to the wrong readings of a machine.

Patients should have a test in a hospital to measure their INR. The check it with me using rabbit brain thromboplastin.

Thanks,

D

[Storky]

Paddy can ban whatever he feels is appropriate as an administrator of this Forum and if people who are registered continue to keep putting up posts on the subject matter that they have been warned not to post on they could be asked or forced to leave the membership.

[paddyandlin in reply to Storky]

Hi HP thank you for the support .

paddy

[paddyandlin]

Hi Dani,

I am not taking your freedom of speech if you feel that strongly on the subject you can respond on one of the other blogs on this subject.

This has been disscussed and argued to the end of the world and back and neither side are backing down so to stop the issues we had previously, i am mearly stopping this thread and point people if they want to talk about this to look at old threads there is enough information on those for peoploe to make up there mind we do not need to go through it all again unless you have something new or diffrent to offer other than you feel they are dangerous and should not be used, other feel they are safe so let leave it at that. I have not deleted the thread so i am not stopping what you have said just saying if you want to say this it has been disscussed before so much we do not need to go over old ground.

Thanks

Paddy

[tassie]

Paddy as admin it is up to you what you allow and don't allow.

Having said that I thank the op for this information. I am new to this board and new to warfarin and have been tested for the last few weeks with one of these machines and my dose based on that. When I read about the possibility that theses machines were not accurate for those with apls antibodies I rang the lab and asked and they confirmed that I should not be using the finger prick machine and I needed to have my INR checked by blood draw.

So I thank the op for mentioning this and possibly saving a life and for that I think it was worth repeating.

[Danimgw in reply to tassie]

Hi Tassie

It's nice to know that someone is aware of this issue, hopefully your life would be safer now.

I checked my INR on this machine after I had my stroke for four

Years. I invested in one of these machines and I was

Happy with freedom it gave me and I didn't listen to my

Specialist just my Gp. Then my heart attack came without warning and then I discovered about that this machine was giving me the wrong readings.

Regards Dani

[paddyandlin]

Thanks for that mention and as I have said this story has two sides and there have been a number of people who use these machines with out any issue as long as it is reviewed by blood team or doc and I think those people would say the machine has saved there life by giving them freedom.

I think it comes down to choice so as I said people have both sides I think we shall leave it at that people can see both sides in older blogs.

Thanks

Paddy