GENETIC DISORDERS EXPERT FORUM
I can't be having another DVT!

I can't be having another DVT!

I am a female  51YO with diagnosed Factor V.  I have had 2 hospital documented PEs, 3 doc DVTs, and last month, 2 weeks after surgery the IVC filter caught a clot. (I knew I was having a dvt at the time but did not want to go into the hosp again)all in the last 9 years.  I had just gotten off of the heparin and my INR was 2.3 - 3 days prior to my leg swelling.  
Long story short, I had the temporary IVC filter removed July 7th.  I haven't bumped my leg or anything today, the only thing is I have been taking a very long class this week (M-F 8-4)  I stand up every 2 hours, but it is still alot of sitting.  This evening my left leg started swelling like a balloon.   I've been taking Warfarin 7.5 daily and it is very difficult for me to keep my INR up in the theraputic range.  I limit my greens, no red meat, don't smoke, and no hormone therapy, which leads me to think that somehow I am Warfarin tolerant if there is such a thing?  If I get worse, or my leg is still swollen tomorrow after class, I will go to the emergency room or walk in clinic for an INR check.  But for now I am desparate to find something other than warfarin that will work for me.  I am way too young and active for a permenant filter.  I live in FL and it seems the Docs in this town are old school.  My brother is a neurosurgeon in San Diego and he has some suggestions but they do not do or use many of the meds or procedures here that they use out there.  Anyway this is not his specialty.  What do I do?  I do not want to go back into the hosp.
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If you are experiencing symptoms, it is important to seek medical attention immediately.

It sounds like you have been through a lot. Response to the warfarin (Coumadin) is highly individual. Researchers have identified genetic variations that affect the way the body metabolizes warfarin. As such, genetic testing (called Warfarin Drug Response Testing) is available for some of these variations, which may be used to help doctors prescribe more effective and safer medications for the individual. The variations and genes tested for varies by lab, but you may want to discuss the benefits and limitations of this testing with your doctor. This testing can be ordered through a qualified health professional and is also available over the internet by certain direct-to-consumer genetic testing companies.

You may also benefit from meeting with a genetic counselor who can review your personal and family history as well as discuss the benefits and limitations of genetic testing. You can find a genetic counselor at the National Society of Genetic Counselors website or through companies like mine, AccessDNA. You can also find a listing and reviews of the online direct-to-consumer genetic testing companies that offer warfarin drug response testing at AccessDNA.
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