Warfarin not raising inr....why? - Hughes Syndrome A...

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Warfarin not raising inr....why?

Charts profile image
32 Replies

I've been taking warfarin for 4 weeks trying to get to inr level between 2-3. Even though I'm taking higher dose 8mg my INR is staying at 1.3. I thought by 4 weeks it would have gone up on that dose. It's a pain because I got to have bloods taken every 3 days to see if it goes up. I'm not taking any meds that would interfere or eating anything high in vitamin k. What dose do you take?

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32 Replies
lloydyuk profile image
lloydyuk

I’d say unfortunately keep going with the raised dose until it clicks in & the INR goes up.

If it gives reassurance I’ve never been able to take anything less than 10mg per day (been on warfarin for 28 years now! Wow I’ve never thought of that before 😬) typical dose for me is around 12mg.

Also check your INR range with your doctor or specialist. As far as I’m aware APS requires an INR of between 3-4. I was at 2-3 for a very long time until a specialist rheumatologist upped it after some problems I have. My GP originally set mine, probably at an INR for a typical cardiac patient?

David-Nisbet profile image
David-Nisbet in reply to lloydyuk

I'm on 11, 11, 12 to try & maintain an INR between 2 & 3.5. This level was set 25 years ago.

Ray46 profile image
Ray46 in reply to lloydyuk

APS does not require INR 3-4, some APS patients require that, the challenge remains identifying which patients. There is very little decent data on this, what there is is contradictory, and recommendations, national and international, vary. A lot. For VTE it's mroe consistently 2-3, for arterial it's pretty much anything goes (e.g. antiplatelet only, VKA 2-3, VKA 2-3 plus antiplatelet, or VKA 3-4).

More detail:

You can look up the British Heam Soc guidelines, which state that "The target INR for VKA therapy in APS should normally be 2·5 (target range 2·0–3·0) (1A)." but they are relatively old now (although recently reviewed), the EULAR guidelines ( ard.bmj.com/content/78/10/1296 ) are much newer, from 2019. To quote those guidelines (my bold):

4. In patients with definite APS and first venous thrombosis:

A. Treatment with VKA with a target INR 2–3 is recommended (1b/B).

and

6. In patients with definite APS and first arterial thrombosis:

A. Treatment with VKA is recommended over treatment with LDA only (2b/C).

B. Treatment with VKA with INR 2–3 or INR 3–4 is recommended, considering the individual’s risk of bleeding and recurrent thrombosis (1b/B). Treatment with VKA with INR 2–3 plus LDA may also be considered (4/C).

lloydyuk profile image
lloydyuk in reply to Ray46

Essentially discuss it with whoever sets your INR. If you don’t know many people have a higher INR you can’t ask. I was one of these people & ultimately got lucky.

Charts profile image
Charts in reply to Ray46

Thank you for all the info!

Charts profile image
Charts in reply to lloydyuk

Will stick it out. Pain going for bloods every 3 days! Been doing it for a month now

I take 18-20mg daily, you need to the dosage that is right for you, if it’s not moving it looks like you need a higher dose. Agreed with previous comment, my INR range was 2-3 initially but I was symptomatic at that and had to fight to get it to 3-4 but feel a lot better at that range. I would recommend asking to talk about your plan with a specialist

Charts profile image
Charts in reply to Patientlyoptimistic

Yeah will speak to my rheumatologist. Thanks

Dot69 profile image
Dot69

I'm on 7 except Sunday when I take 8, my dose has changed over the years I've been on warfarin, I could never work out how my INR goes up or down, diet doesn't change, activities don't as far as I know, doesn't take much for it to change, so I'm told 🙂 keep doing as you're told , I don't think 4 weeks is a long time for it to get 'on target ' not that I'm an expert or doctor, just going by my own stability

Ignacio182 profile image
Ignacio182

Keep raising until it hits... you will find the sweet spot...mine is 9.5mg daily

It is not the mg intake that matter, it is the plasma steady concentration of warfarin that helps you properly thin your blood.

Charts profile image
Charts in reply to Ignacio182

Yeah looks like I'll have to Keep going up!

KellyInTexas profile image
KellyInTexasAdministrator

my dose was more or less around 19 mg daily.

( I had 1 copy a vcork1 polymorphism that did make me a poor metabolizer of warfarin.)

Charts profile image
Charts in reply to KellyInTexas

He said some people just can't absorb it... is that the case with you having this gene? Also is that the case with other medications you take?

KellyInTexas profile image
KellyInTexasAdministrator in reply to Charts

“Poor metaboliser” …

If you can’t absorb it that might be for GI reasons- which could affect any medications.

vcork1 is specific to warfarin only

You would need to be tested specificity to see if you have a problem metabolising warfarin- you would have inherited a copy from one or both of your parents.

Charts profile image
Charts in reply to KellyInTexas

Ah right. I bet they wouldn't even bother to test to see anyway

Leenalina1 profile image
Leenalina1 in reply to KellyInTexas

I used to think that I had high absorption of vitamin K and that's why I need high Warfarin dose daily :D :D. I thought that was because I ate green smoothies daily before diagnosis (weeds from our back yard) and had a lot of bacteria that helps absorb greens. But we are all different and our system is complexly built. It was interesting to know that there can be a genetic metabolizing problem also.

dansker profile image
dansker

My INR wouldn’t rise when I started on warfarin, until I discovered, that a pill I was taking containing silica for my nails and hair was based on seaweed which contains a lot of K vitamin. When I stopped taking those my INR quickly went OK.

Charts profile image
Charts in reply to dansker

Crazy how many things interfere with warfarin!

Zezes-nan profile image
Zezes-nan

Hopefully you will soon be in range, are you taking any of the over the counter vitamins as they can contain things that affect your warfarin. I had some vitamins for my eyes and the anticoagulation nurse read the ingredients and said I shouldn't take them. My range is 2-3 and I've asked my rheumatologist if it should be 3-4 as I have APLS and he said it varies from person to person.

WendyWoo50 profile image
WendyWoo50

I’m sorry u r having such problems. It is quite normal to have issues with INR. It depends on so many factors, what you eat, drink, your state of health (bugs etc) and other medications you take.

I had a target of 4.5 as lower than 4, I suffered with awful headaches and muscle pains. To achieve that I had to take up to 22mg of Warfarin. I had to have bloods tested sometimes daily, never less than twice a week.

One of the reasons I needed such high doses was because I am on Azathioprine (an immunosuppressant drug).

I was in St Thomas, London post op and my INR was too low and wouldn’t raise. I noticed a nurse stood with me ‘chatting’ while I took my meds each time, they also stood there while I was eating. I know they thought I must not be taking my Warfarin or was eating the wrong foods (with too much vit K) but soon they realised that I was and called in their haematologist, who was also stumped.

Four weeks is still early days. I think APS patients do struggle to hold their targets. I wish you all the best and hope you are reassured and soon reach and hold your target. 💋 x

Charts profile image
Charts in reply to WendyWoo50

Thank you! Hopefully get the right numbers soon!!

Pooky7 profile image
Pooky7

I am sorry you are struggling. Reading people’s posts and knowing you are not alone helps. Thinking of you 😊. My INR gets off if I loose weight or I run out of my broccoli I eat so much of. Everyone is so unique😊😊. Please keep us updated😊

Charts profile image
Charts in reply to Pooky7

Yes will keep an update...thank you!

covidclots profile image
covidclots

It's been interesting to read the post & all replies. In July 2022 I ended up in the hospital with covid clots in my lungs. I was given a Heparin bolus & put on a Heparin drip while they tried to get me on Warfarin. They increased the Warfarin dosage every day, and my INR never changed from it's baseline. The doctor was at a loss to answer why, and said I was at the maximum rate. He switched me to Pradaxa and the next morning my INR was up! Pradaxa should not have had any influence on the INR. Anyway, they stopped the Heparin, kept me on Pradaxa, and released me.

Just a thought, Vitamin K is fat soluable. Is it possible to have enough vitamin K stored in the fat cells to counteract Warfarin? If so, that may have been my problem.

Charts profile image
Charts in reply to covidclots

Yeah makes me wonder how high I will need to go. Wait again til Monday to see where I am with numbers. Something is making me feel like it's gone under than the last number because I feel rubbish in myself. We'll see if I'm right

GinaD profile image
GinaD

Warniing: Heretical observation here. When i first went on warfarin it was not after an AAPS diagnosis, but it was after a series of DVTs in my legs. My INR was first up, then down, and all around. My doc at that time (he has since lost his lisence due to perscribing too many opiod pills) said that I was one of the ones whose blood "monitors" (he called it) was making sure that my INR did not go up by making the blood thicker in response to hihgher warfarin. He said the monitors needed to be 'outgunned' and he put me on a fluctuating dose and told me to eat Vitamin K foods but try to eat the same amount of k each day. And it has worked for 20 years now.

Charts profile image
Charts in reply to GinaD

I will remember that if it still don't work as it should. I'll see what I am next. If still low he's need to put it up a bit more surely as I'm not getting anywhere.

GinaD profile image
GinaD

My other suggestion (from the doc who diagnosed APS) is to keep a ridiculously detailed log of food and activities as well as warfarin doeage and INRs. I found, that for me, sunlight exposure raises my INR. Also, changes in activity as well as outdoor temperatures can effect my INR. Good luck!

Charts profile image
Charts

INR has gone up to 1.8 and now taking 9mg. He said target range 2-3 but I would rather it be more near 3 mark. Problem is how is he going to listen to me. I just think I have more chance of seeing the benefits. Im just worried he's gonna stop at 2

Wittycjt profile image
Wittycjt

and now?

Charts profile image
Charts in reply to Wittycjt

It went up to 2.6, so was told to go down to 8mg. Then it went down to 2, so now I'm told to take 9mg and more bloods Monday!!! This been going on for like 6 weeks now

HollyHeski profile image
HollyHeskiAdministrator

Keep going - follow your instincts if you feel closer to 3 is your 'balanced' INR then work to that. Sometimes we need to get there and then that proves everything.

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