On warfarin and test strips being cut - Anticoagulation S...

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On warfarin and test strips being cut

Infinity99 profile image
16 Replies

Just had my GP surgery on the phone, stating they need to save money and want to stop prescribing the Coaguchek test strips for my INR machine that I use at home myself. I wasn’t very happy as I’ve kept my INR in range in between pharmacy appointments over the last 7 years, by doing weekly tests - especially if I’ve had too much alcohol or too many green foods. Apparently I can buy them myself for £100 for 24 strips. I explained to the practice manager that self testing means I can avoid a bleed or clot which saves the NHS money... anyway she’s agreed I can have a pack of 24 strips every 4 months for the time being. This happening to anyone else? I can only use warfarin as have a mechanical aortic valve and other safer blood thinners aren’t effective.

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Infinity99
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16 Replies

G'day Infinity,

Thanks for that informative post. I shall have to watch my surgery closely as I am having a problem with my next supply. Mind you, a tube of 24 lasts me a year. The use by date normally comes before I actually run out.

NICE have some guidance on this, using much of your argument. Maybe worth quoting this guidance to your practice. Does your practice have its own INR Clinic?

Infinity99 profile image
Infinity99 in reply to

Morning Carneuny, thanks for your reply. The INR clinic has been contracted out to Boots Pharmacy so I suspect this is behind the money saving situation. Boots are happy for me to self test but only when they request a reading (every 6 weeks) and they supply the test strips. The whole point of me being in control, is I know there have been changes to my diet so can self test the next day. Especially when I’m away from home or in another time zone.

in reply to Infinity99

Hi Infinity,

Certainly I'll be watching out for similar moves from my surgery. Amazing how we have moved over the last 10 years away from 'el cheapo' ( warfarin) to the more expensive NOACS. Even my GP has tried to get me to move away from Warfarin. I very firmly declined and quoted her chapter and verse on the NICE GUIDANCE. I would do the same to Boots. Neither party ( on cost grounds alone) have the right to refuse to prescribe Test Strips.. I am on 10 weekly tests BUT always test more frequently. I know exactly when and the cause of my INR going ballistic, usually a food issue, but, maybe alcohol on occasions.

If I have a tube of 24, on my current rate of testing, I would only need 2.4 strips a year. I also take my stuff away from home, be it holiday or back to Australia. Boots are not going to be any use in the outback are they 🙂 ?

NICE have stated the more frequent testing the more chance of preventing a stroke.

John

Infinity99 profile image
Infinity99 in reply to

Hi John, 2.4 strips a year is very low compared to mine. I do 1/2 strips a week so between 52 to 104 a year especially when we are back to travelling again! I need 4 tubes of 24 strips at least which would cost over £400 a year. I am disappointed that other people get ridiculous cosmetic treatment, and misuse prescription drugs etc and this is not equal around the country. Postcode lottery indeed!

Jade 😊

in reply to Infinity99

It's always the poor areas that lose out isn't it?

ClickerTicker profile image
ClickerTicker

For those of us that have a mechanical heart valve as well as AF, keeping the INR in range is much more critical. I've been self testing with CoaguChek since about 2003 and test weekly. My INR can be quite variable, but as I self dose I've learned to handle that and mostly keep it in my therapeutic range of 3-4. With strips at less than £5 each, I can't believe it's cheaper for me to attend the surgery (or &Deity. forbid, Boots) to have a venous blood draw taken, tested and my dosage determined and relayed to me.

Incidentally, last time I looked at the pricing of the test strips I seem to remember it was less than 60 quid for 24- was shocked to see the current price. Maybe that's triggered the GP to review prescribing it. Anyway, this whole thing looks much more like budget jiggery-pokery than any true effort at cost saving.

Infinity99 profile image
Infinity99 in reply to ClickerTicker

Hi ClickerTicker, my INR varies considerably too. Boots don’t do the venous blood test, only the finger prick test using the same machine that I have at home. So it seems ridiculous that they can’t rely on trusting people to do their own tests if they wish.

Like you I do adjust my dose slightly too, if it’s too high or low. Boots don’t know that. I only attend clinic if my reading is within range irvI have to attend again a week later. Although usually an extra green tea or glass of wine is suffice and next day within range again. Anyway everything seems to affect my INR not just diet, but more exercise or even sunshine, also stress and anxiety. Also I can tell if my INR is too high and low, and when I test it confirms this.

I know the cost of strips aren’t that expensive in the scheme of things, but I have other medical conditions that unfortunately the NHS can’t seem to deal with. So I see private GP’s - so everything adds up financially. I’m trying to be proactive and prevent medical emergencies / hospital admissions but it seems the NHS are not that forward thinking sometimes.

Your description that it’s all budget jiggery pockery seems apt! 😊

ClickerTicker profile image
ClickerTicker in reply to Infinity99

Hi Infinity99 - I think my variability is mostly related to diet, consistency is definitely the biggest help in keeping your INR under control. If you normally have a lot of green things such as spinach daily, then going on holiday somewhere where veggies are served less than UK (Italy springs to mind) is going to knock your INR upwards quite a bit.

Our surgery has thankfully not gone down the Boots route (yet) or started using a finger prick tester. Their normal vampire does venous blood draws which go to the path lab at Winchester hospital. My arm would be like a pin cushion if I had those almost weekly. It's certainly one of the things that originally persuaded me to invest in a CoaguChek.

Having recently become aware of the higher risk of arterial calcification with warfarin use, I've started supplementing with Vitamin K2 which is supposed to lessen the build up. Sounds kamikaze as we're normally advised to avoid Vit K like the plague, but it's had surprisingly little effect on my INR. I take 200mcg of Vitamin K2 MK7, plus 70mcg K1 that's in a multivitamin. This news item is also relevant and interesting:

pharmacytimes.com/view/vita...

It goes without saying that "your mileage may vary" - I'm not remotely medically qualified, just saying what I'm doing personally.

Early days yet, will ask my consultant about calcification and Vit K at my next appointment.

Good luck

Jumper99 profile image
Jumper99

I get my strips from Roche. I got two boxes of 24 for £142.80 about 2 months ago, so it’s not as expensive as you fear. My surgery have not prescribed strips in the 6 years I have lived here. They say that if they do the cost is set against their drugs budget but if they send a blood test to the hospital for the test it doesn’t cost them anything. But clearly it costs the hospital to do them in time and cost of reagents to do the test. Lack of joined-up thinking by the NHS!

24 strips should easily last you 4 months. Changes in warfarin dose take a few days to affect INR so there is no point in testing too often. 4 months is about 17 weeks and you test weekly so you are well covered.

Hope this makes you feel less worried.

nossib profile image
nossib

When you say other 'safer blood thinners' are you satying warfarin isn't as safe?

Infinity99 profile image
Infinity99 in reply to nossib

Hi Nossib, I’m not saying warfarin isn’t safe but other newer blood thinners in the market don't require regular blood tests, involve no food restrictions, and have fewer drug interactions. Unfortunately these blood thinners can’t be prescribed for people with artificial heart valves but they can for tissue valves. Hope this clarifies situation.

nossib profile image
nossib

Thanks Infinity99, I wasn't aware of this. I had thought of going on to one of the new ones but my Pulmonologist thinks the 'tried & true' warfarin is best for me to remain on. It isn't aparently always the best to change after so many years on one.

Inchcock profile image
Inchcock

I too have the metal aorta valve. Been on Warfarin for donkey's years. Recently I got diagnosed with Peripheral Neuropathy, then diabetes, now Vascular Dementia. they started coming to my flat to do the Warfarin blood test (thank heavens), with was every one to three weeks according to the results. Then, as I had my first Covid jab, that laid me up for a week, and I was getting rather confused, they had a seven-week break in testing. This threw me out of sync with everything. Now, unfortunately, I cannot do the test myself because of the effects of the NP. Then the DVT clinic diagnosed me as Pre-diabetic.

I don't mess about do I, Hehehe! I'm waffling, sorry.

Postcode lottery sounds right to me. Some tenants who live in the Independent Living flats, told me she was moved onto another medication, which meant a blood test every six months - but after investigating my chances, was told not for me with the mechanical aorta valve.

I do hope you can get something sorted out that is amenable for all. Best wishes.

MazzyB profile image
MazzyB

I think that’s really awful for you! They took me off warfarin for appixaban but I really want to go back on warfarin! They may not want me to though! Hope you get sorted

nickibmobile profile image
nickibmobile

I took Warfarin for 15 years (17 - 32) and was fortunate to have a break of 20 years but due to an artificial mitral valve and a pacemaker I am once again on Warfarin. The alternatives aren't suitable for me much to my GPs annoyance. Presently I visit the Pathology Lab at my local hospital for a "prick" test which is every two weeks. They want me to invest in the Roche Coag machine but my GP is being difficult about prescriptions. Your experiences don't make me feel very confident about forking out for a fairly expensive piece of kit when my GP won't prescribe the strips. It is a worry as the Warfarin will continue until the day I die and I'm not planning on that being very soon!!!

rosyG profile image
rosyG

Hi that's a good offer- my surgery only gave 12 every 3 months- I switched to a DOAC but realise you can't- you'll have enough fr weekly testing with a few extra for if you are ill

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