Sticky Blood-Hughes Syndrome Support
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Never stabilized on INR

Hi to Everyone,

I hope you've all had a wonderful day!🌞

I'm keeping track everyday what I eat and I make sure I'm consistent with my K intake and my supplements each day, but still too low or too high. My question is, can Warfarin simply just stop working and that's why it's so inconsistent.? I'm to the point where I'm going to eat exactly the same thing everyday for 1 month and see if that does it. Cheers Holly

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Some of us are just simply like this. It’s maddening. I’m in the throes of it.

I just posted about it a week or so ago and included my August INR Log.

My INR target is 4.0-4.5

I’m also very steady on my vitamin k intake.

prof Hannah Cohen told me about 10-20% of patient’s are this way. ( you are possibly LA positive. )

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Thanks for the reply. Yes it is maddening and tiring and as I get older going for all thes lab tests can be brutal. I am LA positive! There's the explanation. Thank you.!!

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Hi

I’ve been on warfarin for 2 1/2 years and have never had the same INR twice in a row - and I test every few days!

My Drs say it’s par for the course in some people with APS, particularly if you’re LA positive (I am).

I keep telling my Dr I’ve been more stable these last 6 weeks since I’ve been on a mast cell stabiliser but he laughed as it’s still been between 3.8 and 5.4 so not stable in his eyes. This is the best I’ve got though as it usually fluctuates between 2.5 and 8.7!

So don’t beat yourself up over what you’re eating, you’re not doing anything wrong, it’s probably just the APS.

Kelly x

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Thank you for replying! I too am LApositive. I still may try the real consistent diet. Won't hurt to try.

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Yes no harm in trying but please don’t be disheartened if it doesn’t work. I tried to and still have an INR all over the place.

After saying I was more stable, today my INR is 6. I’m hoping this blip is due to an increase in pain meds I’ve taken this week.

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I know, so many things can affect how the drug works in the body. I'm learning there is no magical formula.

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Now here is were Yllek and I have a fun story!

As you can see, I am “ Kelly from Texas.” ( I do live in Texas!) Yllek ( Kelly spelled beck wards) is British. We noticed early on in our forum chit chat we ran a similar course with our APS, and have helped one another out quite a lot with symptoms and tips and directions. We often refrenced our respective Kelly’s with 🌵and 🇬🇧 avoid confusion to other forum readers.

Long story short, This past May I went back to London for a follow up at London Lupus center, as well a first time Hematologist consult with Professor Hannah Cohen at the request of some of my Texas doctors. ( due to this God Awful unstable INR. Hannah said switch to LMWH, by the way...)

So... now to the bit funny story... yes. I am in the camp that says ,” you still keep the diet as consistent as you can. You at least have to do your part, so it says as stable as it can. “

I still say this, although Kelly🇬🇧Is also right! It doesn’t seem to matter. ( it doesn’t matter Regulating its consistence on an ongoing basis. However, if it spikes too high, shoveling in Brussels sprouts will lower the INR within 15 hours ... )

When my husband and I went to England in late May this year, we two Kelly’s decided to finally meet up! We had so much fun- and an added bonus was watching our husbands get on so well. ( we both have gems!)

However...Kellys🇬🇧Husband was really amused by my constant quest for fresh spinach! In my defense it’s fresh and I can pack along ... and any market will have it...easy, right?

If we were driving along, he would say to me, “ oh look Kelly, 🌵, there’s a nice field, why don’t I just put you out there for a while?”😂😂😂

So I say to you... it could be worse! Mooooo.....

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Stress and anxiety can make sooo much difference to me. Had two trips to London alone in one week then two funerals the following week - INR 5.8. One week after all over 3.8. Same routine meals throughout. Best wishes.

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Stress is a big factor for sure. I meditate at least once a day. It helps a lot.

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I do not think Warfarin stop working. How is your new APS_Specialist from July 10th?

Are you selftesting? Do you have Lupus Anticoagulant as one of your antibodies positive?

Kerstin

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Yes am I am LA positive! I do not self test, but not a bad idea. As far as my 1st visit with my new APS specialist, it went ok. It was more of a put a face to a name kind of visit. Hopefully the next one will be a little better.

Cheers

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I have been on Warfarin for 6 years. Target 3.5-4.0. Aim for 4.0.

It can be very difficult to keep a stable INR if you do not selftest. I have to test every second day (by fingerprick that is). Also important to know if there is any difference between the fingerprick and the vein-number of your INR. Even if I selftest my INR is not stable.

I write the number for vein (when i take it at the hospital lab) and the fingerprick-number down to compare and look at next time I am on the same fingerprick-number. A higher INR will give a bigger difference. The fingerprick always higher.

Important to write a couple of things down every day to see how you change INR from day to day and see and understand why there is a change. How much greens you eat is important to write down. If you change your Warfarin-dose which I do very seldom. I change the greens instead which will give a faster drop or raise of the INR. If i change Warfarin-dose it will normally take up to 2-3 days before you get it stable at the new dose. If I am too high in INR one day I eat 10 brusselsprouts at once and it will take it down in 12 hours time.

We are all DIFFERENT (not to forget) with different antibodies, high or low titres and perhaps other autoimmun illnesses like Lupus and Sjögrens for ex.

Good Luck if you selftest.

Kerstin

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The physician who diagnosed me told me that everything, EVERYTHING in one's life can effect INR on warfarin. He told me that one factor which often goes unnoticed is -- water intake. As we age we do not retain a reliable instinct of when we are thirsty. And when one is under, or over hydrated, this will effect INR. So, he suggested I try to "drink by the clock" and not according to thirst. So I began my "drink by the clock" protocol and have remained on that for the 17 years I have been on warfarin. I have also noticed that activity level and sun exposure effects my INR. And then there are all those foods which can raise INR. The one which effects me the most is ginger. And given that, you might expand your log to include activity levels and sun exposure. Good luck! Hope you are able to sort it alll out.

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Does ginger raise or lower your INR, Gina?

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ginger raises INR

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I do drink a lot of filtered water, sometimes with lemon, or ACV and and I also make a baking soda and lemon mix. I admit I'm inconsistent. I will be sure to add water to my log as well. Thanks for the tip on consistency!😁

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I has happened to me. Recently my rheumy has come to the conclusion that I am warfarin resistant. I used to take Marcoumar, but Roche Pharma decided to stopped selling it in Brazil and I was back on warfarin. My INR never reaches the 3.0 target he established. It's been a month my inr is 1.3 with 3 tablets of warfarin a day. Last week I was on clexane (lovenox), 2 aspirins and 5 tablets of warfarin and yesterday my INR was at 5.2 and I am finally out of migraine I was since I started warfarin back. I am LA positive. Sorry the question but what does it have to do with not working warfarin KellyInTexas ?

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After I had my stroke and eventually put on Warfarin I had to stop all the supplements I had been taking for years and years Not sure what supplements you take I’m interested 😊

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The supplements I'm taking are magnesium chloride, vit d3, vit A,

B complex, vit C. I make sure the fat solubles are taken with a healthy meal containing healthy fats. I also make sure to drink ACV drinks or lemon water, or baking soda With lemon and H2O.

Every morning I sprinkle 1tbsp of Organic Hemp Seeds (omega 3). I also started CBD oil 9 months ago, 3x's per day which has stopped my seizures entirely and my vision has greatly improved as well as many other things too númerous to mention. Even when I took no supplements, my INR was still all over the place. It's all hit or miss because like several people have said we all simulate the medication differently. It hit or miss. I do have to say, probably for most of us, our blood labs are our second homes! LOL

Cheers Holly

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The warfarin hasn't stopped working, it is inconsistent because it has a long and complex metabolic pathway in the body before it actually starts getting to the vitK - anything that disrupts or changes any bit of the pathway can cause changes in the end result, i.e. INR. To give some idea, I think it is only around 1% of the warfarin we take that actually ends up being used for reducing vitK - the rest is lost on the way.

Changes in diet (other than vitK), alcohol, caffeine, exercise, infections, almost any other medication, altitude, sleep patterns, thyroid hormones, and probably which side of bed you get out in the morning (although I haven't tried recording that one) - all can affect INR. So can the LA antibodies, if fluctuating they can affect INR and also make it impossible to measure INR reliably with fingerprick, and conversely being on warfarin makes it impossible to measure your antibody levels (you couldn't make this stuff up really).

Self testing may help - it works better for me and gives better visibility and management - but you need to do a plenty of double-testing beforehand to make sure the readings match venous (or are at least a consistent difference) - if your variability is due to LA varying then you may be out of luck.

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Hi Ray46. I have to agree with you! I haven’t tried getting up on the other side of the bed either😂😂LOL. I did google some of my other meds and interactions with Coumadin and what came up was prednisone. It too affects the assimilation of the warfarin as well. Something to do with the liver.... Just another thing to add to my long list. I won’t be getting off prednisone anytime soon (Lupus) so I’ve decided not to worry about fixing it, i’ll Just keep testing and they can keep adjusting and dosing! Cheers Holly

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Hi Hihannula. WELL i think i could be the poster child for erratic INR' with the warfarin . one week Tues. 2.4 --- 3 days later Fri 9.1 and it has happened more than once . doesn't matter what i do OR not makes a huge difference. some of us are just going to be all over the place and that is it . i test INR twice a week , not that we change my Jantoven every time i test but we have to make sure i am not shooting out of site or dropping like a rock . and this will be me i guess.

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Wow, that is real scary. The highest I've been was 6. I think I've come to the realization that I try very hard to be consistent with everything I eat and my supplements and just accept I'm one of those people that will never get to enjoy a stable INR. I've spent far too much of my time and energy trying to figure out what else I should do. My worrying does nothing but cause stress, which ironically causes fluctuations.

Cheers Holly

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Unfortunately for some of us having a stable INR is nearly impossible. I’ve been on Warfarin for 20 years and my INR is rarely stable.

The last month has been particularly bad been in hosp with IV antibiotics amongst other things which has completely screwed my INR

I personally think the more you worry the worse it gets, try and relax what will be will be.

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I have to agree with you!

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