Please help with my warfarin yo yo!

I have now been on warfarin since last June, inr increased to a range of 3-4. I do not understand why it is that no sooner I am in range, I plummit regulary, the visits to the INR Nurses now every couple of days is getting me down. I have tried to talk to my GPs regarding the interaction of certain foods etc but all of them seem to say different things. I even recently asked about things like alchohol which I only drink occasionaly, one says it elevated it another says it lowers it. Should I cut certain foods out, alcohol all together, do meds interact? Please share your experiences and advice, thank you

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  • A stable INR is all about consistency.

    You should take your dose at the same time every day. Write it down before you take it, this is valid for serveral reasons, it creates a history of your taking highlighting if any doses have been missed and prevents a possible double dose, both will have an effect on a test result if they occur a few days before a test. The record would explain the different result if kept.

    Meals will interact with how you metabilise your warfarin - answer eat them as regularly as you can, eat a balance of foods as the dosage is adjusted to what your intake is. You need vitamin K in your diet but you need to be consistant in your intake.

    When you get your INR tested it should also be at a regular time and the same lab. A different reading would be obtained if tested early in the morning against midday or late in the afternoon.

    If a reading is a little out of range dont be in a hurry to change the dose but retest again in a few days to a week, if it is still out of range make small dosage adjustments.

    Warfarin has a 72 hour half life which means the dose you take today will reach its peak in 3 days then reduce by half avery 3 days until it is out of your system.

    I test every two weeks even with a stable INR. If things are getting out of shape they are caught before they become a major issue.

    I keep a spreadsheet of my dosage and INR test results going back until I started warfarin in 1999. An invaluable aid in doctors visits if needed.

  • Thanks Lucky that was really helpful. I'm afraid I'm not much use as my INR when on warfarin was never stable but that was not the reason I came off it.

    The only other suggestion I have is have you asked about self testing with your Anticoagulation Clinic as it seems this constant to-ing and fro-ing to get tested is stressing you out and that in itself will not help get you stable.

  • Regular diet and exercise, well just keeping everything fairly regular seems to be the answer for me. In my opinion every couple of days testing is too often as warfarin takes approx three days to get into your system so your dose is being adjusted before the last adjustment has had time to take effect if you see what I mean. I have never been without a gap of 4 days between INR tests.

  • Hi Traceylou

    I think most APS patients find that they need an INR towards 4 to feel reasonably well.

    Warfarin dose should be adjusted by small increments and the result of the adjustment observed for several days. Warfarin dose should only be changed as a result of an upward or downward trend, not as a result of one days blip in INR. Changes in Warfarin dose can take a couple of days or so to take effect, so it is easy to over or under shoot your target INR by changing the dose too often or by too large an amount.

    Vitamin K is found in many things: leafy green veggies, brocolli, liver etc; this is the difficult intake level to measure and regulate but try to be consistant in your intake of these foods. Vitamin K is an antagonist of Warfarin and increasing intake of Vitamin K will reduce INR, sometimes dramatically.

    Alcohol is easier to measure as the units of alchol can be determined and then consistancy in the intake of units per day can be acheived. Alcohol enhances the effect of Warfarin so a sudden increase in alchol intake will likely raise your INR and a sudden drop in alcohol intake may reduce your INR.

    Self testing and self management is what I have used for 9 years and have found it essential for me. Currently I am off Warfarin and on Frgamin, to try to reduce the number of TIAs that I was getting. If I go back on Warfarin then I will continue to self test and self manage.

    Best wishes.

    Dave

  • I'm throwing this out there, but DO NOT TRY THIS WITHOUT A DOCTORS OK!!!

    I am the weirdo. In the 80 s I was on warfarin for DVTs which were, most understandably, attributed to a sky high platelet count. After a couple of years, the platelets dropped, the warfarin was discontinued and I immediately began having the migraines, which turned into what I then called " panic attacks," which turned into TIAs, which turned into mini strokes before I was finally diagnosed with APS and put back on warfarin.

    I had the same GP throughout this journey and he was most reluctant, ( as in he was ignoring the specialists' opinions) to even consider APS. But back in the 80 s when I was originally put on warfarin, this original GP espoused a theory that taking a slight up and down regimen actually resulted in a more stable INR. Example: take 5mgs 2days in a row, then 7.5 on the 3rd day.

    This approach worked for me then, so I have continued with this approach since.

    My current hematologist never liked this approach as he feared I was/ would screw it up by forgetting what day it was. Nope. I've remained very stable for the 12 years I have been on it. my heme does not like the staggered doseage but he doesn't want to argue with success. Currently I am on a 3 day schedule of 7.5, 7.5, 10 and have been close to the middle of my new target for the past month.Being right on target is the norm for me. The longer I've been on warfarin the more consistent the INR readings have become.( with the exception of tummy bugs. Get a tummy bug and all bets are off. It might go too high, it might go too low. Assume nothing and get it checked 2 -3 days into it! )

    So again, the doctor who advocated this up and down doseage was proven to be stubborn and ill informed about APS and warfarin. Which is why I urge you not to try this without getting an informed opinion.

    It works for me. I don't know why it works for me. ( Of course, my current sacroilliac problems may mean this approach is not working for me.) Even within the autoimmune substrate I'm still the weird one.

    But I can urge you to keep a log of all medications, exercise, ( aerobic and strengthening,) foods, alcohol consumption. You will begin to see patterns eventually which will help you make adjustments to maintain a healthy INR. We're all different. For example, if I do go on a hike over 7 miles my INR will go up. That will mean I give myself permission to eat an extra salad that week. But no wine at dinner after a long hike. Sun exposure raises the INR. Hiking at altitudes over 3000' means I need a higher INR. Those are my patterns. You will spot your patterns if you keep a detailed log.

    Gina

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