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Discontinue Lifetime Warfarin?

Posted , 4 users are following.

joe44525
joe44525

I had a unexplained calf pain a few years ago that was a DVT missed by both the doctor's exam and ultrasound.  It turned into a PE a few days later.  I was admitted to the hospital with a life threatening PE and then put on warfarin for life.

I had blood tests to check for Factor V and other clotting disorders and  they were all negative.  The doctor said that warfarin is permanent despite not having family history or positive lab tests for genetic disorders because the clot was unexplained.  They questioned me about having taken any long flights or road trips shortly before the DVT but I couldn't remember anything, so I said none of that happened.  There was a long road trip, but it was several weeks before I had any symptoms.

 

For whatever reason, warfarin is processed out of my body at a high rate, so the effective dose for me to be in the therapeutic range is extremely massive.  I have never heard of anyone else taking 30 mg daily (2.1 grams per week).

I now remember something that likely initiated the original DVT.  There was no flight, but I remember working at a desk before rge calf pain started and being so busy on the phone that I lost track of time and missed lunch and didn't get up to go the restroom.

I had never mentioned this to the doctors, because I couldn't remember it at the time

This is years later now, but since there is now an explanation for the DVT, I want to get off of Coumadin and just take extra precautions to not sit for hours at a desk or on a flight without getting up again.

Despite being negative for all clotting disorders in lab tests, my medical record is marked with having clotting disorder in a generic way because I had an unexplained DVT which became a PE.

I wonder if I should bring this up now and try to get off Coumadin? I feel like there may be more health risk for me being on massive doses of warfarin for the next 30+ years than there is risk for future clots now that there is an explanation for the original DVT.   

2 likes, 5 replies

5 Replies

  • Gate_Keeper
    Gate_Keeper joe44525

    Posted

    Do we have to stay on these anti-coagulants for the rest of our lives and what harm is the high dosage going to do to us in the long run? Important questions. Have you thought of asking your GP to refer you to the specialists at the hospital to review your medication and give you the information you are asking about?
    • joe44525
      joe44525 Gate_Keeper

      Posted

      I will talk to my doctor, but I wanted to see if others would add their thoughts on this first.
  • sheila91262
    sheila91262 joe44525

    Posted

    Hi Joe, Have you asked to see a thrombosis specialist? Your GP can refer you to any Hospital. Thrombosis UK Charity might be of help, they could put you in touch with Prof Beverley Hunt at St Thomas' London to ask who would be your best contact locally.

    Also you might watch on youtube last years World Thrombosis Day on Oct 13 in London, lots of info on different drugs available. There was a WTD also this year but not on Youtube yet.

    Not all hospitals have the same specialisms and dont always share good practice, which is frustrating if you have a problem that your GP etc dont know enough about. Good luck.

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