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Eagle  ste259 wrote 4 months ago

I AM TAKING SINCE 2015 JANUARY SINTROM(ACENOQUAMOLEROL) AND LATELY I HAVE MACROSCOPIC HAEMATURIA,FOR PREVENTION OF BLOOD CLOTS.DOCTORS SAID MIGHT BE THE SINTROM,IS IT ANY SUBSITUTE FOR SINTROM?PEOPLE TAKING WARFARIN DID HAVE ANYSIDE EFFECTS?SORRY FOR MY ENGLISH AND THANK YOU

Category: Blood Clots

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Brachiosaurus  warrick - (1) - posted 4 months ago

I have been on warfarin for 3 1/2 yrs for a mechanical valve, with no side effects, my father has been on warfarin for 35 yrs with no side effects.
I did look up hematuria and it advised an evaluation of the urinary tract is warranted.

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Iam killer dog  allysint - - posted 3 months ago

It was very encouraging to hear how long you and especially your father have been on warfarin with no side effect s. Do you home test and how often? I have been taking it for 6 years and recently have trouble keeping it stable. Thank you.

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Brachiosaurus  warrick - (1) - posted 3 months ago

Hi, yes I self test weekly with a coaguchek and self manage my dose.I’m only 42 so the rest of my life on warfarin made self management a no brainer. My father on the other hand has been on monthly blood draws for 35 years, which despite my efforts he persists with. I havent had a blood draw for INR since 2015 . I wouldnt exactly call my INR stable either as its varied from 2.1 to 4.1 in the last few months, but with weekly testing I catch it quickly if out of range and adjust accordingly. It doesnt always play by the rules so I guess thats why its called management :-)
With learning initially from my haemostasis lab and then other like minded people self managing on warfarin, and good record keeping I have found the required dosing changes predictable on what effects on my INR, so Im 100% confidant with my dosing as I know my life depends on it :-)
My range is 2-3 .

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Iam killer dog  allysint - - posted 3 months ago

Hi, and thanks for your response. I also use coaguchek but have had increasing problems with it recently. My numbers vary so much I am going from 1.9 to 3.7 and all in between in a weeks time, which means I usually go to the clinic for a blood draw just to be sure. Now the people with coaguchek have begun rationing my supplies because they say people are using too many strips. I would gladly pay for extra strips when needed just to have confidence in my numbers. I loved finding this site it's helpful to be able to glean a little knowledge here and there. My range is 2.5 to 3.5.

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Brachiosaurus  warrick - (1) - posted 3 months ago

Also I know there are a number of online sites like ebay and amazon where you can buy strips. Here in NZ self testing is not funded and we have a public health system. I buy from a medical supplies company for around $7 nzd a strip.

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Brachiosaurus  warrick - (1) - posted 3 months ago

There is heaps of really good information on this site- https://www.valvereplacement.org/whats-new/
Its a forum for valvers and one member has been on warfarin for 51yrs, there are many self managers and lots of practical INR info if you search the threads.

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Brachiosaurus  warrick - (1) - posted 3 months ago

Ok do you see alot of variance from the lab tests?
What problems do you have with your meter? Is it the meter itself or the not enough blood on the strips fault? Im guessing with big inr jumps you perhaps are on dosing that has you on different amounts on different days? This tends to create a yoyo effect, sorry for all the questions but if I can help in anyway.

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