Wild INR

mrfox

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Jan 21, 2018
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63
Location
London UK
Hi all!

For context: I've had an ON-X mech aortic valve since June 2018. I'm on Warfarin and test at home, in addition to being under the care of the anti-coagulation clinic at the hospital where my operation was performed.

My INR has been tough to get in check at the best of times. My usual dose has been high at 12/13mg daily. After surgery my range was set at 2-3. About 6 weeks ago I noticed my INR was guttering a little (sitting at 1.9/2.0, even 1.8 at one test). During that period I had an event which has been treated as a TIA - my arm went numb for ~1min on the way back from the gym one Wednesday. No damage has been observed as a result and my INR range has been set at 2.5-3.5 preventatively.

Here's where it gets tricky. I've been (successfully!) changing my diet to lose weight. That has involved eating a LOT of calorie sparse veg and I am particularly fond of broccoli, asparagus and sprouts. I informed the clinic of my change in diet and we've been watching my INR. It's been an absolute nightmare to control though. I'm now on ~20mg daily and the clinic staff are beginning to worry. My INR can swing from 2.7 to 2.0 in a 2 day period, and then commensurately back to 2.7 in a day. My coagucheck was very recently calibrated and perfectly accurate.

We're now beginning to discuss dietary restrictions and I am deeply disheartened by the apparent course ahead. I've enjoyed taking control of my diet, exercising heavily and beginning to feel as though I own my body again following the trauma of surgery. Having this taken from me is undesirable. If anyone has any experience to share that might help me get to the bottom of how to control my INR more steadily I would be delighted.

Warm Regards,
Simon
 

pellicle

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mrfox;n886777 said:
We're now beginning to discuss dietary restrictions and I am deeply disheartened by the apparent course ahead. I've enjoyed taking control of my diet, exercising heavily and beginning to feel as though I own my body again following the trauma of surgery. Having this taken from me is undesirable. If anyone has any experience to share that might help me get to the bottom of how to control my INR more steadily I would be delighted.
contact me if you wish, I can work with you as I have others here and I am sure we (us working together) can bring you into as stable as possible and be able to have a better handle on how to deal with any exceptions. PM or email me at hotmail

(you know ...I'm pellicle ... right)
 

leadville

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Aug 28, 2017
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154
Location
Wigan, England
Hi MR fox

Medics are not dietitians

Anyone who suggest restricting veg/greens from your diet needs educating


taking control of your own diet, dropping weight and going the gym is the most pro active
thing you can do for yourself.

Stick with it take advice from people that understand what is happening and " stay the course " ( SB : ) )

20mg daily is not uncommon , i personally find hard exercise messes my INR results but over the period of the week
i find an acceptable balance as you will too .

It sounds like you have found comfort in your new regime so dont let uneducated people rob you of it.

Best wishes & accept Pells offer
 

leadville

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Aug 28, 2017
Messages
154
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Wigan, England
just to add ; .... 20mg daily ( you seem to be alarmed by this )

There is a relationship between your body weight and dosage as well as other factors

for reference. i currently take 16mg daily at a weight of 135 pounds
 

pellicle

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Queensland, Australia
mrfox

to add to Leadville
leadville;n886783 said:
just to add ; .... 20mg daily ( you seem to be alarmed by this )
...
for reference. i currently take 16mg daily at a weight of 135 pounds
basically it takes what it takes ... while weight is a factor a more significant factor is your genetics, specifically the cytochrome gent CYP2C9 and variants

https://www.ncbi.nlm.nih.gov/pubmed/12913403

This is of course academic because the #1 way to determine the correct dose is by measuring INR and dosing to that.

I agree strongly with the point made about diet ... your clincian is behind the curve of education and current best practice (but only by about 10 years)

Its well known that in the months after surgery (exact times vary) your dose increases. This is described in the literature as "an exaggerated response to initial dose"
https://www.ncbi.nlm.nih.gov/pubmed/10532508
​​​​​​​

Also its been observed that "keto" style diets can influence INR too
https://journals.sagepub.com/doi/abs/10.1345/aph.1e454
 

vivekd

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Sep 28, 2015
Messages
88
Location
Atlanta, GA, USA
I take around 15 - 16 mg warfarin to maintain my INR between 2.5 - 3.5. My body weight usually fluctuates between 135-138 lbs. I also had a TIA last year possibly because of my INR dropping to 1.5 for a week.
 

jwinter

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US
I will add to this also. I have an ON-X (November1, 2016) and it has a therapeutic INR range of 1.5 to 2.0. The only reason I posted is because I started out 2.5 to 3.5 (NOT what surgeon told me) but argued with whomever would listen until one hospitalist called Mayo and then checked my model and serial number on my card. Turns out that that serial has been approved by FDA for the lower INR. It is imperative that it passes that protocol.

Warfarin for me has a big "bouncing" affect. One time I had to tell everyone to just stop and wait an extra day and it leveled out. If you keep adding more and then taking away over and over again I think it will never hold close to the number you want.

I test once per month at coumadin clinic. I am starting to feel confident enough to handle this myself soon I am thinking.

As for vegetable eating. They dose my warfarin to my diet and not other way around. I like it as I like my vegetables and have to keep any eye on my weight.

Good luck in handling this. Ask questions and keep pushing forward. I think you will get it(or the docs will if you YELL loud enough)
 

Protimenow

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Aug 10, 2010
Messages
2,104
Location
California
One thing that's been stressed by many here is consistency. If you maintain your diet, dose to it.

Take Pellicle up on his offer.

At higher INRs, your meter may report a higher value than the actual value - this is a known 'feature.' If your INR is 'too high' it probably wouldn't hurt to have a blood draw to confirm the value (there's a meter that I use, and that I've written about that can more accurately confirm high reported INRs, but I won't mention it here).

Don't do 'yo yo' dosing -- warfarin is a slow acting drug - effects of today's dose may not be apparent for a few days - changing dose before you know the effect of the last change will get you on the dosing roller coaster. Pellicle will help you to patiently find the right dose.

Don't always trust the 'professionals.' In my experience, few of them really know about INR management -- I used to go to an anticoagulation clinic and it was amazing what ancient protocols they were using.

With help and patience, I'm sure you'll find the right dose for your body.
 

Warrick

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Joined
Dec 27, 2015
Messages
390
Location
New Zealand
Protimenow From another site I came across this, I was trying to help this person out...
hows this for a dosing protocol-

“I developed a rough calculation; I sum up previous weekly dosage, I extract it from new adjusted dosaga for next week. I divide it by previous weekly dosage and multiply the result by 3, finally add the final result to the last INR, it gives roughly a prospective figure. It appears to work for only for a week.”
 

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