INR self testing in wales

[Angelina-123]

hello I have been on warfarin almost 5 years and was recommended to by the Roche machine to test at home as I am young (30s) and work full time and was coming in weekly. This was in Cambridge since moving to Wales in Swansea they have been very dismissive about me phoning in and now the GP practice manager has said she wants me to come in but not given me any reason why. I asked a GP on recent visit but he said it’s a Wales thing they don’t deal will patient self testing. After coming home and googling I can see they do in north wales and found a Cardiff and Vale document for self testing. Anyone else in south Wales self testing? I am paying for the strips myself. Thanks

[Midnight_Voice]

Hi. Are you calling in your INR so they can adjust your dosage? My local hospital (then Cheltenham) taught me how to self-adjust, so now my practice just calls me in twice a year to check my Coaguchek against the practice one.

I got mine after being checked by a doctor in Spain with one - I’d never seen one before - and my UK practice, who were still taking bloods and sending them off, gave the OK that Roche needed in order to supply it.

At the time, I was working in Spain and in the US a lot, and two doctor’s measurements in the US would buy a Coaguchek, so it wasn’t just the freedom that was a benefit, it was the cost as well.

I knew I needed the Warfarin, as I had a near-fatal saddle PE in 2005 and, off Warfarin in 2007, another DVT, which the Royal Glamorgan sorted me out over before it got any worse.

So it’s been Warfarin for life ever since then, well supported by my local practice, and I even get the strips on prescription. Shame you don’t - try asking when you ask your practice for a referral to a hospital department where you can be taught to self-dose, so you can get out of their hair 😛

Though now, nearly 20 years down the line, our local hospital, Dorset County, has just moved me onto Apixaban, after a small bleed on the brain. Fixed dose, no need to measure INR, doesn’t need the close monitoring that Warfarin does, less risk of further such bleeds, apparently.

Maybe your practice wants to suggest that?

[Angelina-123 in reply to Midnight_Voice]

thank you for your reply, it seems like postcode lottery for prescription strips as I have always had to pay when I lived in Cambridge as well.

Yes I phone up and they adjust but I definitely feel like I could adjust myself also,. But now they want me to come in all the time for testing (in the middle of the day) which is difficult with work. Thank you I will look into the hospital. I am also on it for life.

[MazzyB in reply to Midnight_Voice]

Self adjustment sounds great. I almost know what they are going to tell me!!thanks.

[Kabalino in reply to Midnight_Voice]

I live in SW France, self testing is not really recognised here. However for over 11 years my GP has encouraged me to self test and adjust my medication accordingly. All the best to you

[MazzyB]

I’m shocked 😮 I’m a self tester travelling as we live in our Motorhome but not to Wales. The only problem I have they insist on sending me letters all the time! Which goes to my Daughters home which I have said I would prefer an email but they said no for some reason. Hope you get sorted. Marian

[happy12345]

Yes it's a nightmare in the UK. I self test and pay for my strips. My inr dropped to 1.5. wanted to be checked to see if my machine was correct, a 4 week wait for test and doctor and pharmacist didn't have any idea about dose. I said, so I'm on my own. He said yes, not a great situation to be in. Care while on warfarin getting patchy now. Been on it for 14 years, I may consider Apixaban if allowed. I think they leave you in danger on warfarin with action like this. They said if I get chest pain or breathing problems call 999 very reassuring. 🤔

[Angelina-123 in reply to happy12345]

wow that’s such a long wait! Do you normally dose yourself?my cardiologist said something similar if I get dizzy to call 999 however I suffer from migraines so get dizzy all the time!

[happy12345]

Yes I do adjust my dose but never been that low in 14 years. I just spoke to another doctor and I'm booked in for a blood test on Thursday to check inr. I'm also going to speak to in-house pharmacist to see if I want to change to one of the newer blood thinners any recommendations would be good. Warfarin has been good to me but interacts with so much and the inr checks especially when your paying for them because will not prescribe on NHS. They say it's a National Health Service it's not it's a postcode lottery a couple of miles up the road you can get them on prescription so unfair. I understand some people can only be on warfarin depending on what you have.

[Ignacio182]

I selftest since 2018 and buy my strips and machine. Can not rely on pharmacies and third parties to take care of myself