Good evening I’m new to this site so please be gentle.
I’ve been put on warfarin, clopidogrel and apixaban due to have a couple of strokes ,AF and Myeloproliferative disease with JAK2 + mutation.
I’ve been on warfarin for 41/2 weeks with varing doses the last 16 days at 20mg and yet the highest reading I’ve had is 1.4 , today’s reading was 1.1 they want me at 4.5. the doctor asked me if I’ve actually taken the pills,which obviously I have. Any thoughts. I did take multi vitamins up to day but as it has a small level of vitamin k I’ve now binned them.
Any help and advise is very welcome thank you.
David T
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davtay
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Hi there. It took ages for my INR to stabilise and I finished on a dose of around 11mg a day. It seems that metabolism, diet and genes all determine how much you need. If you need to be on an INR of 4.5 it is worth persevering with warfarin because as I understand it , the newer anticoagulants dont guarantee the higher anticoagulation levels. Others may have different opinions on this.If the multi vitimins contain vitimin K they may just br affecting INR.
Sorry but I dont know anything about your diagnosis but welcome to the site. X
Hi. I have been on warfarin for quite a few years, and it is very sensitive. It took quite a while to get it to 2-3 reading. Lots of things will affect it, worst for me is course of antibiotics, which usually throws it out, and once reading is out seems to take ages to get it back in line. I have been going to clinic every 2 - 3 weeks, but for the first time I have gone 6 weeks!. However just finished a course of steroids because of breathing, heat I think, so it may possibly be out of range when I next get a test. Should have gone today, but heat too much, and changed till 7th Aug. One tip, always check with pharmacist if you are going to take any over the counter medication. Even things like deep heat can affect levels. It is a pain of a drug, but does give you protection against stroke. Best wishes
I've been on Warfarin since 2013, on if for life. I had to have my inr target highered to 3 - 4 to try and stop the clots forming. I found the best thing to have is Beetroot. It may sound funny but beetroot helps with blood conditions and even if I only eat it at least once a week I find it helps to keep my warfarin levels stable. I used to have to take 15mgs a day now I'm down to 9mg at the moment. Are you eating too much of dark green veg? If you wanted I could email what you are safely to eat, as it's best to keep you duet to the same every week. Don't eat too much sugary and fatty foods, as that works against the warfarin. Don't have cranberry at all. If you drink alcohol limit to one glass a day.
Evening dragonlover1971 thanks for reply I don’t eat a lot of greens but I was taking Sainsbury’s multi vits that I’ve stopped now.
Never knew about beetroot,I love the stuff.
Could you email the good and bad foods that would be fantastic. My wife is a chef so she is pretty hot on most of it,but the more information the better at the moment.
Hi DAVTAY,I was on Warfarin for 8 years but it was a pain.Levels up and down depending if I was taking medication for other conditions ie cold/flu or even simple over the counter pain killers.This would then take ages to get my INR levels back to normal.Change in diet can also trigger levels to go haywire.Result is that my GP,at my request,prescribed Rivaroxaban.Hey presto levels remain stable.Only downside of taking Rivaroxaban is that,at this moment,there is no anti coagulant to stop any bleeding,unlike Vit K injections for Warfarin.Good luck with the Warfarin.
Have you got sticky blood antiphospholipid syndrome ? To need an INR of 4.5 is usual for this condition to be between 3- 4 I have clexane injections to cover me if less than 3 for this and self test which makes things a lot easier
It’s only Warfarin which gives you an INR the rest of the new medications work in a different way
I’ve not been diagnosed with sticky blood but it has been banded around since my strokes.
Also I’ve been sweating excessive amount for the last 8 or so weeks days and nights.
I know it’s a heat wave at the moment but this started before the warfarin started. Don’t know if this could affect things.
I took warfarin for about 6 years. When I first was put on it my inr was nuts. It would be as low as one and one time when I went to the er it was 6.9! It took a few months to really regulate and then I was taking it with no issues and not too many adjustments for years. I am on rivaroxaban now because I started to have problems with my inr again. But it took a while a few months at least after I got out if the hospital. If they want it at 4.5 and you're at 1 they need to increase your dosage for sure. And I personally wouldn't recommend multi vitamins on warfarin because they can be misleading as to the amounts of vitamins and minerals they contain. Keep your head up and try not to worry but if you feel like something is wrong go to the dr.
I’m on warfarin for life, but although my INR is quite stable I do stick to low alcohol and not too many green vegetables but I’m totally ok! Hope you get better soon.
I am on Warfarin “just started”and I eat all the greens I want. I ask the Doctor about cutting down the Greens and he told me to keep eating what I always have. He said I will make sure that your does will eventually be 2.5 and we will build the treatment around you and your diet! That’s good enough for me
Hi,INR levels can be affected by diet,supplements,medication for cold/flu and just about anything else.I was on Warfarin for over 8 years and my INR levels were all over the place.The clinic would increase/decrease warfarin dose depending on currant levels but this would take weeks.I knew what effects certain foods/meds,if I was feeling under the weather,would have on my INR levels and could control them myself but the Warfarin clinic insisted I followed their instructions.I must point out that I am medically trained.Because of the ups and downs of the Warfarin meds I am now on Rivaroxaban and feel 100% better.This is a relatively new drug and does come with a warning that at this moment in time there is no anti coagulant should you have a major bleed.But to feel this well after all the unpredictable years on Warfarin I feel is worth the risk.Good luck with the Warfarin.
you're already on a "new anticoagulant" which is apixaban as well as warfarin. That's why I asked why you were on both. As far as I'm aware, there's no indication to be on both. Which one were you on first? I would check that you are definitely supposed to be taking them both.
Hiya misswoosie. I was on apixaban for a year then hand another TIA which is when they put me on warfarin at the same time. Just had INR test Reading is at 1.3. That’s following 2 weeks at 17mg and 16mg alternating.
Good heavens. What have they increased your dose to now then?
I know quite a bit about warfarin and TIA's/strokes (have been a senior nurse in both warfarin management and thrombosis in the past but no longer work as a nurse) but not much about myeloproliferative disorders and JAK-2. Such a bummer that you also have AF. I feel for you. The TIA's must be very scary .
Some questions which you don't have to answer, but I would like to try and offer some help if I can.
Do you have high platelet counts associated with your MPD?
Also wondering if you take any other prescribed med's that might be reducing the effect of the warfarin? Just as there are some things which can enhance the blood thinning effect, there are some which can absolutely kill the effectiveness of warfarin.
I don't know how old you are , but younger people very often need very higher doses of warfarin, but still a little concerned that even though your INR is low, you're also on apixaban. As you probably know , the effect of the apixaban isn't accurately reflected by the INR.
Who is actually managing your warfarin dosing ie telling you how much to take? How long have you been on it now?
Which hospital are you being treated at for TIA and the Haematology problems?
sounds like they weren't very good at dosing/managing your warfarin. If changes are too big/small, too frequent and without any real knowledge of why INR is unstable then the whole situation is just made worse and you end up with an INR graph that looks like a mountain range. You can't effectively dose warfarin unless you know what you're dosing!
sorry-this bit maybe sounded confusing "just a little concerned that even though your INR is low you're also on apixaban"
To clarify- I know that at the moment your INR is sub therapeutic, but even so,being on both warfarin and apixaban will likely increase your risk of bleeding. Is this something they've mentioned to you?
I can't find any references in the academic journals re using both warfarin and apixaban so I'm struggling to learn! Of course I know that your case is probably quite unusual so there might not be much out there.
Yes they have said about the bleeding risk. I had a meeting with my stroke consultant last Wednesday and he has said to stop clopidigrel and take aspirin instead. He has emailed my haematology consultant with regards changing from apixaban and warfarin to something different, what that may be he did not say.
To be honest I’m pig sick of throwing pills down my throat and still feeling like dog dirt.
Oh let’s not forget the accusations by the anticoagulant nurse that I’m noting taking my meds , that’s really getting to me.
I can see how the comment by the anticoag' nurse irritated you, but they do need to ask you if you're definitely are taking it and unfortunately people not taking warfarin, or taking it incorrectly is the most common cause of INR's not being where they should be. Some people have a gene that means they are resistant to warfarin. I wonder if anyone has actually measured the concentration of warfarin in your blood ? It's different to the INR and shows if your body is actually dealing with the warfarin as it should or if you may have warfarin resistance.
If the anticoag' clinic you go to is associated with the Haematologist you see (many are if they're hospital based) next time you go, ask them to arrange for you to see the Haematologist. If you don't get anywhere that way, call the Haem' secretary and tell her you need to see the Haem' as you're not happy with how things are being managed.
You could also try the patient advice and liaison (PALS) team.
SHOUT-(not literally!) , or if you're not feeling up to it, ask your wife to do it for you. Be proactive! The NHS isn't what it used to be.
Your stroke consultant seems to be a bit more on the ball and he'll have his sights very firmly focused on preventing any further neuro' events
I wonder if they're thinking about putting you on daily heparin injections? That would have been something that we would have STRONGLY considered in a case like yours where it's vital to achieve full anticoagulation.
I hope I've maybe been of some help and that you get things sorted.
Ok so we seem to be moving on a bit showing signs of warfarin working now as I’ve just been in hospital for a few days with passing a lot of blood in my urine. I’ve now been told I am Lupus anticoagulant positive. With zero explanation could anybody explain what this is please.
Sorry. I made an error. You cannot have one if the newer oral anticoagulant as you have Lupus ( an antiophospholipid antibody that increase your risk of clots)
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