Warfarin.: It took me a long time to... - Atrial Fibrillati...

Atrial Fibrillation Support

31,287 members36,948 posts

Warfarin.

benmaise profile image
27 Replies

It took me a long time to get my INR sorted at the right leval. Everything was just right then i had to take antibiotics. It went to 5.4. I startd to eat more than usual green veg to bring it down. Now its gone down to 1.8 .. Its difficult trying to it right. My Warfarin has been reduced from 5 to 4 . I find Wafarin makes my life very difficult.

Written by
benmaise profile image
benmaise
To view profiles and participate in discussions please or .
Read more about...
27 Replies
Vonnieruth profile image
Vonnieruth

Can you not swap to the newer meds if you ask

As Vonnieruth says, many of us who experienced some difficulty in maintaining regular INR have opted to change to one of the newer NOAC alternatives and from what we read here, very view seem to have regretted the change. However, it is a very personal issue and it might be a good idea to discuss it with your GP, but first make sure you understand the difference and that you will be comfortable with making the change.

in reply to

I have mixed feelings about changing from warfarin to one of the newer anti coagulants. An acquaintance of mine was on one of the new drugs and had an accident on her mobility scooter breaking her hip and thigh bone. She sadly died from internal bleeding, which there was no way of stopping because of the anti coag. Had she been on warfarin her life could have been saved by an injection of vitamin K, which reverses the effect of the warfarin and allows the blood to colt. Unfortunately there is no reversal drug for the new anti coags.

in reply to

Those of us who take one of the newer anticoagulants are aware that we are more at risk but there are drugs that will help to control internal bleeding providing there is time for them to be administered. Personally I feel the likelihood of not surviving a major bleed solely because of one's choice of anticoagulant is real but very, very thin indeed.

in reply to

As I said, it is very much a personal choice, but from what I have heard from medical specialists is that most, if not all DOACs are marginally safer than warfarin when it comes to spontaneous internal bleeding, especially in the cranium. There are antidotes available for at least one of the DOACs, but again the general view expressed is that bleeds caused by serious accidents can be dealt with by medics provided the patient is transferred to A&E in time and much the same applies to patients taking warfarin.

seasider18 profile image
seasider18 in reply to

This poor holiday maker did not survive his accident but it only says as usual that he was on a blood thinner.

A man died after tripping on a ramp in a walkway next to building works at the Arndale Centre, an inquest heard today (August 9).

The distraught wife of Alan Jones said the ‘tragic situation’ could have been avoided but instead her family has been left without a husband and father.

The 78-year-old was on holiday in Eastbourne with his wife June when she said he tripped on a ramp ‘which was not secured to the pavement’ in the walkway next to the redevelopment site on January 30.

He died days later at Eastbourne DGH, the inquest at Eastbourne Town Hall heard.

In a statement, June Jones said, “This has left our family shocked as he was taken so suddenly, but also watching him suffer between the accident and his death is something I would not wish on anyone.

“Alan was communicating with us and the nursing staff until he passed which made the end even more harrowing.

“This is a tragic situation, which could have been avoided, and has left me without my husband and my children without their father.”

Mrs Jones, who had been married to her husband for 55 years, described him as a ‘very outgoing’ sociable man who enjoyed birdwatching, gardening, and playing boules.

The inquest heard how the retired engineer from Swindon had been walking back to his hotel along Terminus Road just after arriving from the train station following a day out in Rye.

Mrs Jones said, “We crossed the road heading towards the hotel where there was some building work happening.

“The pavement was closed and all pedestrians were funnelled off the pavement onto a designated walkway. The walkway was single file due to people walking in both directions and the space being tight.

“There was a ramp on the pavement/road. I was in front of Alan and did not see the fall but the witness who was directly behind said Alan tripped on the ramp which was not secured to the pavement.

“He fell into the barriers and hit his face and then backwards onto the road hitting the back of his head.”

She said a nurse was on scene and ‘sprung into action’ to look after him. Mr Jones was on blood thinner for heart problems so the bleeding was ‘extensive’ she said.

She added that, upon returning to the scene a few days later, the ramp was in the same position but had been ‘bolted to the pavement’.

The inquest also heard from Dr Andrew Pool who said Mr Jones was admitted to Eastbourne hospital after a ‘mechanical fall’. He sadly died from an acute haematoma as a result of the fall, the doctor said.

Coroner Alan Craze concluded Mr Jones’ death was an accident.

He said, “All this started when sadly Mr Jones had a fall. It’s not my job to decide whether anyone has been negligent so I haven’t called anyone about the steps people took by the works in the road.”

A spokesperson for the Arndale Centre declined to comment when the Herald approached them after the inquest.

Suzy1954 profile image
Suzy1954

Hi. Are you having regular blood tests? It does take a while to get sorted at first. I have to take warfarin instead of the newer drugs as I have a valve replacement. But I don’t let warfarin rule my life. It had to fit in with me not the other way round. I have a coaguchek machine to monitor myself & go to the clinic every couple of months. If there’s a problem in between I can ring the anticoagulant dept. Good luck.

Gladaven profile image
Gladaven in reply to Suzy1954

Dear Suzy, please could you tell me where I would get a coaguchek machine and most importantly how much would it cost. Cheers Gladys xx

Suzy1954 profile image
Suzy1954 in reply to Gladaven

Hi Gladys. Coaguchek have a website which is where I bought mine. It cost me around £300 so not cheap but it’s been invaluable to me. I’ve just checked their website and it’s in maintenance at the moment but there’s a number you can ring. Hope that helps.

vovvarna22 profile image
vovvarna22

I had varied experiences with Warfarin. Yes, took a long time, to start with, to become "stable" on it. But after that it was fine for a few years. Last December I asked if the newer types of drugs would be ok for me. yes! So now I have been on Apixapan for 8 months and it feels good to know the LNR level is always the same.

meadfoot profile image
meadfoot

Have a conversation with your EP if you still have one or your GP if not about changing to one of the new DOACS you may find one of them could make your life easier. They aren't suitable for everyone but it's well worth having the conversation if you are struggling with warfarin. I take rivaoxaban and find it easy to take. Good luck.

mswillow profile image
mswillow

Hi yes it get annoying some seem able keep inr stable whike others struggle my dose changed to much in week was getting fed up it rembering take different dise on certain days.. maybe concider the newer ones I been on rivaroxaban for goof whike now suites me as just take one tablet day and that it, no clinics, yellow book or finger test, dose not having change.. but that be a personal choise but good to get to hear different experiences help you make choice right for yourself. No harm having conversation 😊

smn100 profile image
smn100

I spent ao much time in the INR clinic is was ridiculous. So I swapped to a NOAC. Best decision ever. So much easier to have a normal.life

Bagrat profile image
Bagrat

This is the best time to ask for a newer anticoagulant. Unstable INR means your GP should be happy to agree.

MarkS profile image
MarkS

Warfarin is great if you can stay in the right range. It's actually more effective than the NOACs if you are in range more than 70% of the time, and it has other benefits like cutting cancer risk. However you do need to monitor your INR and to get the best results that means getting a Coaguchek. Some people do have an unstable INR and for them NOACs may be the best option.

benmaise profile image
benmaise in reply to MarkS

I have never heard that Warfarin cuts cancer risk.

MarkS profile image
MarkS in reply to benmaise

Have a look at this research on Medscape: "Warfarin Linked to Lower Cancer Risk"

medscape.com/viewarticle/88...

"Use of the anticoagulant warfarin may protect against a broad range of cancers in people over age 50, according to a large observational study from Norway".

"A subgroup analysis of patients with atrial fibrillation or flutter showed significantly lower rates of cancer overall (IRR 0.62; 95% CI 0.59–0.65) and cancer of the lung (IRR 0.39, 95% CI 0.33–0.46), prostate (IRR 0.60, 95% CI 0.55–0.66), breast (0.72, 95% CI 0.59–0.87) and colon (IRR 0.71, 95% CI 0.63–0.81)"

So it would appear from this study that your risk of cancer is 40% less with warfarin than with the NOACs. Given that half the people in the UK will get cancer sometime during their lives, that's a massive reduction.

Fastbeat profile image
Fastbeat

I agree with all comments given so far.I used to take warfarin but had trouble being stable, changed to Rivoroxaban four years ago so much better for me

Not according to what the A&E doctors told her relatives. They tried to stop her bleeding but could not because of the blood thinners.

FlyingBrick profile image
FlyingBrick

Hi Benmaise, I have been on Warfarin for over 6 years and my INR goes up and down like a yoyo. Warfarin likes stability, in diet, exercise, rest and overall has served many of us for many years. I test myself at home. I have my own blood machine and whenever I am not well or struggling to breathe I take comfort in the fact that I can test and react accordingly. I have had the opportunity to change but did not for one simple reason. Easter of this year I did not feel well. I tested and my machine read plus 8. Rang the coagulation clinic who asked me to perform the test again with fresh needles. Got the same result. Then took a trip to A&E where my INR was 11. Had Vitamin K injection immediately and fluids. No reason given as to why my INR went so high, so this could repeat itself. Therefore with my Haematology Consultant remained on Warfarin. It is not for everyone, but I find comfort in testing and Knowing if I am in or out of range. I hope you find an answer for you.

David.

MisUse profile image
MisUse

Not everyone can swap to new NOACs. I have a leaky valve, and any valve issues then it has to be warfarin as I understand it. It is very sensitive, things like drug changes, antibiotics and lots of over the counter meds can affect it. I am on longest time between testing, 7 weeks, so very pleased at the moment, but agree it can be a real pain

MazzyB profile image
MazzyB

Sorry to say this but I’m fine on warfarin really it does slightly fluctuate but 9n the whole it’s stable, hope you get sorted.

avrambaer profile image
avrambaer

Warfarin is a difficult medicine to regulate and it can have difficult side effects. Use a NOAC if you must use an anticoagulant.

ILowe profile image
ILowe

In most people, warfarin dosing is not difficult. I think the health workers can make it more difficult than it seems. There are reasons for swings, I will post tomorrow, when I have more time. There are principles that make it easier.

ILowe profile image
ILowe

To answer your question. When taking antibiotics this does get tricky. I go to several drug interaction sites. I then act with margin. So, if I am low and the meds increase the INR I do nothing. I counteract only if there is no margin.

In my view there are three useful, easy to read journal articles that are helpful. Let me know if you cannot get them.

1/ Kim et al 2010 Effect of a simple two-step warfarin dosing algorithm on anticoagulant control..... Journal of Thrombosis and Haemostasis 2010 vol 8 p101-106

This is brilliant and every self-doser should study it.

2/ Schulman etc Single dose adjustment versus no adjustment of warfarin... Thrombosis Research 2010 vol 125/5 p393-397

This makes a good case for two results before making a dose change

3/ Lowe I. 2017. Warfarin self-dosing, a case study on long term self management of anticoagulation. Journal of Observational Pain Medicine vol 1:6

This studies various problems in detail. The natural fluctuations in INR can exceed 2 INR therefore ranges should be broader. A reasoning is set up which clearly distinguishes between three main reasons for out of range results; which are; 1/ chance -- most likely 2/ change in reservoir level -- corrected by stepping, and 3/, the least likely, changes in the input=output balance. Only this needs a dose change.

Coco51 profile image
Coco51

Hi benmaise. I sympathise and hope your INR is now behaving. But I have found life much easier on Apixaban. I prefer to eat what I feel like and eat as many or as little green veg as I feel like. Also like you Warfarin would go out of range if I was ill which was troubling. The GP said it was only expected that on Warfarin INR would only be in range 60% of the time. To me that didn't make sense, so I asked to switch to a NOAC. I was worried about the lack of antidote in case of a bleed, but when I researched this it appears that even intravenous vitamin K or FCCs can take 4 to 6 hours to work on Warfarin. So that isn't immediate. Then a friend of mine on Warfarin died of a brain bleed. He probably would have had it with or without the Warfarin. Nothing could stop it. So I weighed up the various risks and stuck with the NOAC. At least we have a choice and you can do whatever makes you most comfortable.

Droopy60 profile image
Droopy60

I was on Warfarin for 5 years with a fairly stable INR then on Christmas Night 2015 I had a severe rectal bleed and was rushed to hospital. I was given Vitamin K and then had to inject myself with heparin for 2 years until my cardiologist put me on Pradaxa, best move ever especially as he told me there is now a reversing agent and the drug only works for 12 hours and then reduces protection, hence the reason for taking it twice a day.

You may also like...

Warfarin

those who have been happily on warfarin for years with well-managed INR yet are still being...

Warfarin

Is anyone who is on Warfarin doing their own INRs? My GP is keen on the idea and so am I as it would

warfarin

Going for an INR tomorrow and I'll see if my score is low enough to reduce the mg of warfarin. I...

Warfarin.

sounds complicated about vitamin K . If I eat more green veg one week and a lot less next week , I...

Warfarin