INR INSTABILITY - side effects and your experience....need answers.

posted 19 months ago by berrielee

SO FATIGUED... anyone experienced this??  My INR has been very unstable for past two years.  Been on coumadin permanently since '91 (stroke) (Initial DVT in 1960).  I have Lupus plus Antiphospholipid Antibody Syndrome APS, Sjogrens Syndrome, and every hypercoagulable disorder possible.  I think about 50% of SLE pts. get these blood clotting disorders as part of their Lupus.  As patients age, the body no longer "wants" coumadin and doses get lower and lower and harder to manage.  My INR has jumped all over from 9.3 last month to 2.8 and other radical readings for 2+ years.  Part is from recent antibiotics (pneumonia) and super-high boost of Prednisone (Evil-Drug).  Does anyone have experience with getting extremely fatigued, as in EXHAUSTED, when their INR is radiical?????  I'm certain that it is what makes me "wiped out" and barely able to function at times, but with so many meds (esp. the daily Prednisone 10mg now) how can I tell.  After years, you'd think I would know more, but I don't cuz it gets crazier.  Please share what do you FEEL and reactions and symptoms when your INR is jumping around.  I would really appreciate this.  Since I don't know which is the best place to post this, I may also put it at the Discussion Board also.  ALL INFORMATION would be greatly appreciated. Basically, what side effects do you have or notice when your INR is too high or too low.  (Mine is managed at higher-then-normal with target 3-5.)

Answers

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  • butterfly

    My INR sometimes jumps around when my disease is active and hence I'm fatigued at the time.  The only way I've found to handle it is to know that the level will fluctuate and that while it's doing that I'll need at least weekly blood tests and dose adjustments til all settles down again.  I wish I had a more encouraging answer for you.
         What helped me psychologically was to say OK that's part of it for now and attend to feeling better and/or taking better care of myself

    19 months ago

  • roselove1986

    Hlo welcome to my love,
    How are you today i hope you are okey.also my name is Miss roseline,i saw your profile at
    (/www.wearelupus.org) I have interest on you,i would also like to know more of whom you are and i want you to send me email on my email address (roselinembaye@yahoo.co.uk)so i can give you my picture for you to know whom l am.here is my email address believe we can move from here.i am waiting for your mail to my email address above,Remeber the distance or colour does not matter but love matters alot in life,
    yours friendly roseline.
    (roselinembaye@yahoo.co.uk)

    12 months ago

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