Warfarin - YOUR thoughts..

This forum topic is for any thoughts you have on Warfarin..Good..Bad..Ugly..Whatever..!

Tags: coudamin, dabigatran, heart, inr, mechanical, valve, warfarin

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Permalink Reply by alan.c.hughes on May 4, 2011 at 21:33

http://www.amazon.co.uk/Coumadin-Warfarin-Help-Book-Anticoagulation...

Anyone got this book ? Is it any good ?

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Permalink Reply by Graeme on May 4, 2011 at 22:11

Alan

I believe that from what i have read that dabigatran wil NOT be a replacement for warfarin for use for mechanical valves. The test papers I have seen so far online only mention it for use for other blood clots, strokes, deep vein thrombosis and atrial fibrillation. Also, given the cost - and the way the NHS is undergoing enormous changes and cost cutting its unlikely we will see this drug put into use at all in the UK in next few years.

As a footnote my doctor (and myself) are TOTALLY disgusted with the NEW just announced blood testing changes in our local NHS trust - our area (Medway) has now lost all regular veinous blood testing facilities for warfarin patients - now replaced with finger prick testing machines with staff who don't know how to use them - and you have to book 3 weeks ahead at the test centres - which are very limited - a complete and utter shambles so far.

To cap it off - After this change I decided to buy my own Roche finger prick test machine - and have now found out that the NHS will NOT be providing the strips anymore for free in any trusts in any area. At £2 a pop for each strip that has me really on the back foot! Does any one else have any recent stories about this and blood testing in general ?? (UK of course)

cheers (not really!!)

Graeme Archer

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alan.c.hughes said:

Hi, I've been on warferine for 8 years for a heart valve replacement but still struggle with it !! I'm thinking of getting the rosche home testing kit so I can track my level a bit more closely but I'm also looking with interest at the release of dabigatran with wouldn't require the kit.
Anyone know where we are with dabigatran for replacement valves ?
My target inr is 3-5 so it's pretty high generally.

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Permalink Reply by Tracie Reynolds on May 5, 2011 at 6:10

ive been getting the finger prick test for the last 2 years thats all they offer at my surgery its quick and instant but when you have to go up to 3 times in a week your fingers get sore. i cant get funding for my own machine and the dr will not give me a perscription for the strips. got to have decortition done on my lung after fluid was left there from my valve op it my gp would not belive me when i said to him i was still feelin poorly and my bloods have not been right i know why now.. well bye for now and hope you all keep well xx

Graeme said:

Alan

I believe that from what i have read that dabigatran wil NOT be a replacement for warfarin for use for mechanical valves. The test papers I have seen so far online only mention it for use for other blood clots, strokes, deep vein thrombosis and atrial fibrillation. Also, given the cost - and the way the NHS is undergoing enormous changes and cost cutting its unlikely we will see this drug put into use at all in the UK in next few years.

As a footnote my doctor (and myself) are TOTALLY disgusted with the NEW just announced blood testing changes in our local NHS trust - our area (Medway) has now lost all regular veinous blood testing facilities for warfarin patients - now replaced with finger prick testing machines with staff who don't know how to use them - and you have to book 3 weeks ahead at the test centres - which are very limited - a complete and utter shambles so far.

To cap it off - After this change I decided to buy my own Roche finger prick test machine - and have now found out that the NHS will NOT be providing the strips anymore for free in any trusts in any area. At £2 a pop for each strip that has me really on the back foot! Does any one else have any recent stories about this and blood testing in general ?? (UK of course)

cheers (not really!!)

Graeme Archer

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alan.c.hughes said:

Hi, I've been on warferine for 8 years for a heart valve replacement but still struggle with it !! I'm thinking of getting the rosche home testing kit so I can track my level a bit more closely but I'm also looking with interest at the release of dabigatran with wouldn't require the kit.
Anyone know where we are with dabigatran for replacement valves ?
My target inr is 3-5 so it's pretty high generally.

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Permalink Reply by Carl Meek on May 10, 2011 at 8:22

I had my Aortic valve replaced with ON-X exactly a week today, and got home from hospital yesterday. I also have a dacron ascending aorta graft, but it's not attached to the valve, they are two separate prosthesis.

I'm a bit of a control freak, and don't tend to trust the medical profession as a whole - there's just so much inconsistency. So I ordered my Coagucheck a few weeks ago in prerparation. I had IV blood tests first 6 days, then onto my Coagucheck.

The surgeon told me that self testing was the way to go - he said do it every single day for the first month, until it' stable, and even after that he recommends every 2 days.

Then the pharmacy wharferin expert in the hospital was downright patronising about self testing, telling me i wouldn't want to do that, and i should leave it with the professionals.

Then I got home and talked to my GP, who said, and i quote, he had "Never heard of self testing". Genuis.

The arrangement here for most people is that the testing is done in local pharmacies, funnily enough using a Coagucheck XS Plus (the expensive multi-patient one). He said that my surgeon was probably biased, and i shouldn't self test. How could it possibly cost as little as £250, they cost thousands!

Anyway, i badgered him, and got him to prescribe the pills and also the test strips, which he grumbled at as they will cost £128 per pack of strips. We agreed, in a very patronising manner, that the test strips were just for holidays!!

So... i then trecked to the chemist, where i met a lovely head pharmacist who totally supports self testing, and is happy for me to do the tests instead of her, and call her with the results.

I got there in the end! I'm now testing daily, and calling the pharmcist with results as required.

See what i mean about inconsistency?

is that the GP prescribes me the strips, and the wharferin.