Warfarin levels

[Knavesmire27]

HiI would be really interested in other peoples experiences when first put on Warfarin, especially how long it takes levels to settle. Mine have been a bit erratic and clinic trying different variations/combinations. For example this week have 3 straight days of 5mg then 4 straight days of 6mg, but last week it was alternative days - basically same dosage just in different order? I would love to hear of other people's experiences. Thank you

[PadThaiNoodles]

People have very different reactions to warfarin. I'm on 2/2/2/2/2/2/1, but a friend of mine is on 9/9/9/9/9/9/8 (both for a target INR of 2.5). And our diets aren't that dissimilar (we both eat a lot of vitamin K).

It's also hard to judge because it can have a half-life in the body of up to 4 days. So your INR can lag dosage changes by a considerable amount.

I started with 6mg, 8mg, 6mg so of course when it did start to come up it way overshot. On day 7 I was at an INR of 4.1. They tapered it down but then started increasing the dosage again for a "soft landing", but because I'm so sensitive to it that shot my INR back up to 5.7. In total it was 34 days before I was "in therapeutic range", but I've been in ever since.

[Knavesmire27 in reply to PadThaiNoodles]

Thank you sou h for your reply. That helps a lot. It's amazing how different it is for everyone. That does make feel better. Thank you

[Time2go]

Hi have been on warfarin for 7 years now and it's been beyond frustrating staying within range. After 6mths I bought my own INR machine as it got exhausting going to see the nurse twice a week. My Inr is still unstable (taking 7.5mg daily atm) I have to test weekly, my nurse then rings for the results and doses me for the next week depending on results. Sometimes I drop without any known cause and end up having to inject Fragmin and increase warfarin until in range again. Anything I eat or drink will effect my Inr, some of us are just sensitive to warfarin but other medications are not available to us with certain heart conditions. Hope this is helpful

[PadThaiNoodles in reply to Time2go]

Ugh, that doesn’t sound like much fun. Wishing you all the best.

[Wingnutty]

I've been on warfarin since 2013, INR target 3.0. Currently taking 15mg Monday and Friday and 14mg all the rest. I remember when I first started taking it, I was on a much lower dose which gradually ramped up over a period of a couple of months. I think that as I became healthier recovering from open heart surgery, I needed more and more just to stay within limits. Please get yourself a testing device and test frequently. I never go more than 3 weeks without testing. You will have to pay for the device. It was 300 quid when I bought it, but you can get the testing strips and lancets on prescription and if you have a prepaid certificate or you are over 60 you will get the consumables effectively free of charge. I had a really bad experience at the end of 2018 before I had my own tester. If your INR appears to be stable, the NHS increase the time between testing until something goes our of kilter with it. They will let you go for up to 12 weeks without testing if you have been stable for about 6 months, but 12 weeks is a ridiculously long time to not test. In my case, after about 6 weeks, my INR had drifted up to 4.9. I only found out after attending A&E with an unstoppable nosebleed. The medics did a lot more damage to my nostrils trying to stop the bleed and I finished up in surgery after a couple of days. This led to a 4 day stay in hospital followed by discharge, then a return to warfarin therapy and a resumption of the bleed, followed by another 5 day stay in hospital, followed by over a month of Fragmin injections which are not pleasant. Don't go there! Get yourself a tester and test at least every 3 weeks for your own safety. More frequently, if your INR starts changing without any known cause.

[Greenthorn]

My hospital were keen to switch me to an alternative blood thinner. I believe this was the policy at the time, to reduce the lists of people needing INR readings. Like many, my levels would be affected by food and drink. I opted for Rivaroxaban and have been right as rain ever since. No need to be monitored.

[andy110519]

Hi, on the flip side I have a target of 1.5 to 2 and apart from a blip about a year ago when my dosage was changed from 4,4,3 to 4,3 repeating, I've been fairly constant for 5 years since my surgery.It is a bit disconcerting when I'm told to book an appointment for 12 time but it did settle down fairly quickly after surgery so I guess I'm one of the luckier ones.

Take care.

Andy

[Blackknight57 in reply to andy110519]

1,5-2 is only slightly higher than normal(1-1.5)

[andy110519 in reply to Blackknight57]

It was a newish valve at the time, and onix I think and the surgeon liked it because of the low INR requirement compared with the other valves. Seems to be working ok for me.

[PadThaiNoodles in reply to andy110519]

On-X. I believe they’ve been a big hit.

[Blackknight57]

warfarin inr is erratic. As for same dose different days it depends on day of week your inr is tested.

Finally in on 6666766 Saturday-Friday for 14 weeks now up til my next test 3/1/25. I started Easter 24. Spent Easter weekend in hospital.

[Knavesmire27 in reply to Blackknight57]

Thank you souch for all your comments. It is really good to hear everyone's experience. Some good advice thank you. It will also help me with the questions I will ask the clinic.

[alicebear]

I was on warfarin for about 14 years and I never found my correct dosage it use to really infuriate me as the nurses use to think I wasn’t taking it correctly

But I was taking what I was prescribed I was quite young and thankfully my employer at the time didn’t mind me getting checked regularly

Luckily I had the Ross procedure 2 years ago and now I don’t need to take warfarin anymore

[FrankWillbe]

As you have read Warfarin is often hard to balance and it was for me. My INR would often hardly change and so levels were increased, while other times it had jumped higher. Overca few years it never really settled.I regularly had blood tests at a local NHS hospital and they would not let me go more than 2 or 3 weeks between tests when levels were unstable.

As my condition has improved (blood clot has gone) I have been changed to another medication.

As an extra comment Warfarin effected my feet causing dry skin, redness and itchy skin.

[JustRembrandt]

Hi Knavesmire. Previous responses pretty well cover it. My experience with Warfarin has been good overall - been on it about 10 years. After about 3 months getting the original dose and daily amounts right (mix of 6 and 7), I have been stable and consistently close to the 2.5 target for INR.

But there are occasional blips - change diet/other meds/illness and it’s frustrating to have more frequent testing until the readings stabilise again. Being retired and close to local surgery mean not too much disruption but I can imagine it being a problem for working folk who need regular testing. Good luck!

[Mitchum]

It's consistency that is the answer. I have a diet containing a certain amount of vitamin K which varies little. I also drink approximately 30 units of alcohol per week which is spread out over the whole week. I don't binge and I don't stop drinking. Either of these actions will affect my INR. I am in range 95% of the time and when not I either take a little more or a little less vitamin K which usually brings it back into line. I'm into my 23rd year of warfarin and my range is 3-4. Can I also advise that testing too often can cause problems if you change dosage every time it's out of range. In the past I have tested on Monday (2.7, below range) and tested Wednesday, without doing anything, and it has been 3.2! It can fluctuate for no apparent reason.

[Knavesmire27 in reply to Mitchum]

Thank you. That is really good to know.

[Sav100]

I started Warfarin just over a year ago, the 1st 6 months were a nightmare, different doses each day, then INR would either be to high or to low on testing, I have a mechanical valve so no really other options but did get very frustrating. Suddenly it seem to just settle. For the last 6-8 months it’s been within range without much movement, did have a blip a few weeks ago after a belly bug which thrown everything out. But within 2 weeks all back to normal. I found it was about working out how much of some foods I could have and learning what had vitamin K in it, I mean who knew lettuce was high without research. So it’s not about cutting out stuff just working out how much is ok, with the meds.

I found it does get better but it takes time xx

[Mitchum in reply to Sav100]

That's correct. The key is to dose according to the diet and not vice-versa. If you decide to go vegetarian or go on a weight loss diet you must expect a huge change in INR and a consequential change of dose. That is when the consistency comes in.

[PadThaiNoodles in reply to Mitchum]

My sister (who was a cardiac nurse) gave me some good advice: have one large source of vitamin K each day; it will then swamp out most of the other smaller changes.

I have snack-size bags of pine-nuts for days when the menu doesn't include something else.

[Ironfloor173]

I have been on Warfarin for 10 years for a rare blood disorder which causes DVT's, although since then I have had a silent heart attack. You will have a target INR and regular blood tests to monitor it. If your INR levels are steady then the blood tests are further apart. The dosage is based on a weekly basis not daily so it's usuall for people to have a different dosage some days. Many things can affect your INI levels such as alcohol, vitamin K and medication etc, which is why you need regular tests. A too low INR could mean you were not being protected, and a high INR could mean you are more prone to internal bleeding.

[PadThaiNoodles]

One other thing to mention: my warfarin clinic is at my local hospital, so it's the hospital's general phlebotomy dept that does the blood draws. I guess they figure warfarin people are in there a lot, so whenever I check in I'm put straight to the front of the queue. I've never waited more than 5 min, even when there are 10 or 15 people in the waiting room.

[Mitchum in reply to PadThaiNoodles]

I would also advise investing in a CoaguChek home monitoring machine. Worth every penny!

[Knavesmire27]

Thank you all for taking the time to share your experiences. I think it is good to share and there is some really good advice given. Thank you