Anticoagulation self-monitoring alliance - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anticoagulation self-monitoring alliance

8 Replies

For the majority of you on warfarin, please try to take time to have a look at the ASCMA website and sign up for their newsletter: acsma.org.uk/.

With the NHS and GP surgeries all on the cusp of major change as the Clinical Commissioning Groups take over, it will be important to take control of your own health as much as possible.

If you are wondering whether a self testing machine is for you, please visit: hughes-syndrome.org/self-he....

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8 Replies
tiredmum profile image
tiredmum

thanks, didn't even know this existed !!!

Elaine77c profile image
Elaine77c

Hi Kate

The Hughes Syndrome Org link seems to be broken. Other one working fine!

Elaine

Thanks Elaine - I think it's got something to do with the way HU displays links. It is working fine so I will try to put the whole thing in here again:

hughes-syndrome.org/self-he...

Failing that, just look at the HSF website and under the Self Help section, you'll see INR and self testing :)

thomas_tz profile image
thomas_tz

Hi,

I am all for self-testing and self-management, however having Roche in the mix makes the effort a bit dubious. I signed up, but am curious to see how much of Roche involvement we will see in this.

Thank you,

Thomas

Yes, there is obvious self-interest there, but they don't have the same kind of funding as the big pharmas and they have put a lot into patient care. We will have to see what their input is.

wildchild profile image
wildchild

my pharmacist warned me that my self testing monitor may be incorrect and that it may need calibrating and i should get a venous test done, he is himself on warfarin and also uses a machine...

in reply to wildchild

Please read the section of our website:

hughes-syndrome.org/self-he...

It explains any difficulties for APS patients who may want to self test.

wildchild profile image
wildchild in reply to wildchild

I called roche today to ask about this...they don,t do calibrations...but I don't see it as a problem really...It is great to have this little machine that I can travel with...my anticoagulation clinic at my gp also uses a larger version....If I am always pin -prick tested then that is what I judge my INR on. I may occasionally ask for a venous sample which I would then want to feed fresh into the machine.

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