I'm new to Warfarin and AF, I am just... - Atrial Fibrillati...

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I'm new to Warfarin and AF, I am just in the initial assessment stage.

No_choice profile image
16 Replies

I called in to see the Doctor this morning to arrange my Warfarin prescriptions. It seems from initial investigation that self monitoring is not supported by my local CCG (Leeds West) so I asked the Doctor what were his views on the issue, and if he had any suggestions. His response was to ask "what is self monitoring?" followed by "how can it be done?" and "I have never been asked about this before". If anyone in the in the Leeds West area has managed to get support for INR self testing, I would be very interest in hearing how it was achieved. Self monitoring is too important to ignore.

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16 Replies
BobD profile image
BobDVolunteer

It is also expensive with machines costing about £300 and strips about £5 each I'm told. There used to be some CCGs which allowed it and supported the strips on prescription but they seem to be few and far between. Of course there is nothing to stop you buying your own machine and strips alongside whatever your practise can arrange. You could write direct to the CCG and ask but I doubt they will be sympathetic.

As somebody who has a very stable INR I find no need for self test but I guess that if you are unable to keep to a stable INR then doing the testing at home might give some comfort ---or drive one to distraction.. Do also remember that INR is a rather vague measurement and no two tests on the same sample will give the same results so please don't get obsessed by numbers. At HRC last year we were told that due to the variations in results we should aim towards 2.5 to 3.5 rather than the 2 to 3 previously suggested. and that there was little risk of anything nasty up to about 5

Bob

No_choice profile image
No_choice in reply toBobD

Thank you BobD for your informative comments. I am proceeding a step at a time and I think that the knowledge gained on this forum will be invaluable. Knowledge is power, so they say.

Christo4 profile image
Christo4

If you are new to Warfarin then you do not want to be self testing until you are settled as you would not know for sure how many Warfarin tablets you would be needing.

Yes self testing is good could be very good later on when your blood tests are in spec and not before.

let us know how you get on with self testing and what support you would get at this early assessment stage

No_choice profile image
No_choice in reply toChristo4

Thank you Cristo4 for your advice, which I will be following. I will post again with the response I get from West Leeds CCG.

jennydog profile image
jennydog

I agree totally with Bob. I don't have a problem with warfarin and only have to see the nurse every 6 weeks. BUT if you travel abroad then it may be useful to self-monitor.

No_choice profile image
No_choice in reply tojennydog

I also agree with Bob on many points but I also put a great value on the degree of independence that self monitoring would give and also the reassurance it would give.

Beancounter profile image
BeancounterVolunteer

Hi No choice (no such thing by the way :) )

I agree with the advice given don't rush in to self testing at least get stable first and then think about it.

But if you google self testing INR Leeds, there is a group which does it.

google.co.uk/url?sa=t&rct=j...

Be well

Ian

No_choice profile image
No_choice in reply toBeancounter

Hi Beancounter Ian, I have taken note of your sound advice, I am just testing the water at the moment. I haven't found many choices, but I'm not giving up just yet. I note from your response that you are a volunteer, I would be interested to know what that involves as I do have some spare time.

Thank you, Derek.

Thomas45 profile image
Thomas45

I self monitor but don't (yet) self manage. I think that will come in time. Yes the machine did cost me £299. The strips cost about £3 each but I can get them on prescription. I decided to buy my own machine for piece of mind.

Roche, who make the Coaguchek machines have a scheme to pay for the machine by monthly instalments.

I wouldn't rush into buying one, although I wouldn't be without mine.

My INR would not stabilise, and it appeared that the 3mg tablets were giving me painful rashes on both my forearms. My GP put me on Rivaroxaban but because of what I believed to be adverse side effects, I asked to go back on Warfarin and decided to buy a Coaguchek machine. The rashes turned out to be caused by Ramipril.

One of my sisters was diagnosed with Type 1 Diabetes, 6 years ago. Her current blood sugar testing machine was given to her by the manufacturer at a diabetes patients information day and she of course both self monitors and self manages. I think in time Arrhythmia patients will get free machines to test for INR.

Thomas45 profile image
Thomas45

The work in the Bradford area getting more patients on anti-coagulants has reduced strokes by 10%, that's not just an improvement in the quality of life of those 10%, but a large saving to the NHS. If copied throughout the country then part of the massive savings could provide patients with INR checking machines. I'm sure I could self manage, as long as I had access to a 'warfarin' nurse when needed.

BobD profile image
BobDVolunteer in reply toThomas45

Yes that was Matt Fays baby. Great job!

Bob

Thomas45 profile image
Thomas45

Just noticed my spelling mistake. Having a coaguchek machine gives me peace of mind. I've checked Roche's website and they have schemes to buy the coaguchek over 12 or 24 months.

waterflo35 profile image
waterflo35

I must admit I didn't know one could self test. After the initial adjustment of the dose,, for two years now, I visit the nurse every 6 to 8 weeks. The reading hardly changes, just an odd point up or down, and off I go. I'm now at one with the process and the warfarin med and don't give it a second thought.

armitaged profile image
armitaged

Hi

Just to wish you all the best in your search for what is right for you. I have been on Warfarin for 32 years and self test and self medicate. I am pretty sure I am the only person to do so in this area. My GP is happy with it and gives me prescriptions for strips, I buy the lancets myself through choice. I love the control, particularly at times of dieting change (holidays, Christmas, diets, etc.) and subsequent reassurance. My INR does vary when on a stable dose.I had a valve replacement four years ago and would not have been released home if I had not been self testing. My Consultant believes that everybody capable of it should be self testing, a shame that this has not yet spread to all the medical fraternity but hopefully it will.

Best wishes

Doug.

dedeottie profile image
dedeottie

I self test for piece of mind. For example I am able to say with certainty that I have been In range at least 95% of the time. If I can see my I.N.R. heading too high or low I make minor adjustments although I'm not meant to as I am not yet self managing. I bought my machine after about 9 months. My doctor approves and I have enough strips on prescription to test once a week. I wouldn't recommend doing until your I.N.R. has been fairly stable for a while. X

Mike-tyson profile image
Mike-tyson

Don't think self testing is advised. You will just need a blood test once a month when level has settled either at your doctors or your local hospital. It's usual to see an Anticoagulation nurse at the hospital before you start on Warfarin. It is in Staffordshire and would think the same NHS procedure applies countywide.

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