Considering self-monitoring. Who's doing it? Your experience? Please share!

[iwantsimple]

[warfarin1]

2%of the people on warfarin in the UK are self-monitoring. There are over one and a quarter million people on warfarin in the UK and this growing by an average of 15% per year.

This is because of lack of awareness and also because people have to pay for the monitor and not all GPs will prescribe the strips (despite the fact that they have been available on prescription for eleven years.

There is now a campaign to get the monitor available on prescription, and the National Institute for Health and Clinical Excellence is evaluating self-monitoring,

To sign up to your support for this campaign please go to acsma.org.uk

[olleberj]

I tried the CoaguChek machine but it didn't work for me. My understanding is that the test strips can sometimes react to the APS antibodies and result in an incorrect reading. The vendor who sold me the machine took it back and refunded my money as they aknowleged this problem does exist.

I have heard that many people with APS use the machine successfully and really love it. I'm just one of the people who was not able to use it due to the ongoing presence of the APS protiens in my blood.

[tim47]

I am fortunate that the coagucheck works for me. Yesterday I went for one of my occasional blood draws and comparison against my machine so as to keep the surgery happy that my machine is working. They have just started using the latest surgery model coagucheck , and my reading was only 0.1 different from theirs. Hopefully now the surgery will have more confidence and I can keep the cross checking to an absolute minimum. It is a great shame that it doesn't work for everyone, it is so convenient

[kelgem]

can anyone tell me if the machine is available in australia?

[bernieembleton in reply to kelgem]

You could contact Coaguchek themselves. They would be happy to tell you where in Australia they are available from. I have been using mine for nearly two years, and not had any problems with the machine.

[peterm]

I have being using my coaguchekk machine for over a year now. It works fine for me,

I live in Melbourne and source the strips from Sydney. I had been to the local clinic 176 times in 7 years for INR tests, and hundreds more in my previous clinic in Wellington. My veins have always been hard to find and the scaring was really bad from so many attempts (sometimes three per visit) Self testing has been a real relief for me. I was diagnosed APS about 12 years ago.after a series of massive seizures and a major clot in my left leg..

[Frain in reply to peterm]

Hi Peter I am also in Melbourne and just wondered who you see for your aps. Cheers Geraldine

[peterm in reply to Frain]

Hi Geraldine, Feel free to give me a call on 0448981803.

[bernieembleton in reply to Frain]

Hi Geraldine. It is nice to find you here. A very good site with plenty of support. xx

[Frain in reply to bernieembleton]

Thankyou Bernie xxx

[daisyd]

Brilliant so reassuring, I do it regularly as advised on the date by the clinic and email result to clinic who the send me a letter/ form to tell me if Warfarin needs changing, they phone me if INR is much above range or below.

The problem is the machine is very expensive and some people have to pay for the test strips

Every six months I have it checked against a clinic test.

I don't know about you but I can usually tell if my INR is out of range, so can test early if I feel I need to, really good for when you go on holiday abroad.

[wildchild]

I have been using my coagucheck xs monitor for 5 years now....my local GP uses the larger version and give me prescription for strips when I need them.. It is very convenient to have it and I can take it travelling....I am aware that it is about 0.1 different to venous draws but I love the freedom it gives me and like Pete I also have hard to find veins...always hated the fuss to find that vein...!

Like Daisy I can usually tell when my INR is a bit out of range and tend to test myself if I feel the need to.

[tipi in reply to wildchild]

My husbands GP only uses the coagucheck anyway, never draws bloods at all. Been trying to get his own, but GP keeps saying not to...don't know why. Syas they fit the test around his lifestyle, but as his level goes up and down so much he is always at the GPs and its such a nuisance.

[iwantsimple]

I spoke with my doc yesterday, and she is checking into through a company called Lincare. I am in the USA, so I'm not sure how it all works here with insurance, etc. She said the Lincare rep will contact my insurance company to see about coverage. I have been going to the lab weekly for INR checks since last May. I can tell when my INR is getting too low, but I cannot tell when it is too high. A couple of weeks ago, it was over 5, and the lab freaked out. The only difference I felt was "really good." So, go figure! I find I feel best at around 4, but my docs want me to stay between 3 and 3.5. Anyway, if I monitor myself, I can keep it where it needs to be without letting it get too low or two high before testing.

[Jade]

I have self tested since 2004 and have never been supervised because the local hospital coagulation clinic did not agree with self testing so if I did not discontinue using my machine I was not to come back.

My then GP prescribed the strips and needles and left me to self monitor. He said " if diabetics can do it so can you".

I have always adjusted my own dose and test every other day. I have never had a venous draw to compare.

I do realise this is not ideal but it has worked well for me.

My latest GP says I know more than him so leaves me to it.

[peterm]

I also adjust my own doses now. My specialist told me to aim for an INR of between 2.5 and 3. My biggest problem now is remembering to do the tests, Oops! just remembered that I was going to test this morning, better do it.

[panda60]

I have been self-testing since 2008 with the support of my clinic. I have a contract with them that I have my machine checked every six months to see if it needs recallibrating. I have set dates to call with my reading and am then told what dose to take, or can call in between if out of range.

I would not feel happy about going it alone as warfarin is a dangerous drug (and I do confess to being complacent about it) but appreciate that not everyone has support.