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Medications for treatment of Factor V Leiden Homozygous
I have been diagnosed with factor v leiden homozygous (meaning I inherited the blood disorder from both my mother & father). I am currently being treated with warfarin. I have had PE's and DVT's, I currently have chronic blood clots in both my left & right legs which I have had for so long that they are like concrete and cannot be removed or stented. I was told by my vascular surgeon that he could do nothing for me or for the clots in my legs.
Does anyone else have this blood disorder and what medication(s) have been prescribed for your treatment?
I am having reactions to the warfarin and would like to have another option for the treatment of this disorder.
Thank you.
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I too have factor v leiden (FVL) homozygous. I discovered it at age 69 with a thrombosis in my arm. It was treated with 40 days of heparin shots followed by three months of cardioasprin. Unfortunately the risks were not correctly assessed; I should have been more curious and less engaged in wishful thinking.
9 months later I had a DVT in one leg and sizable bilateral PE. Luckily I was hospitalized immediately and started treatment with high dose heparin while being tested and CAT with contrast media confirmed PE.
Treatment was standard Xarelto (rivaroxaban) dosage: 21 days of 15 mg 2x a day, followed by 18 months of 20 mg 1x a day. Recent ecography exam showed clots mostly dissolved, D-Dimer is < 500 (466). Next month I will reduce Xarelto to 10 mg 1x day. Repeat tests in 3 months. The reasoning was 10 mg gives nearly similar protection as 20 mg (based on studies), while reducing risk of bleeding.
I wonder what triggered the initial clot at the age of 69. I gave birth at 35 and had no issues.
My mother had DVT in her 50s, but at the time FVL was not discovered. Years later she had a stroke at 86 and was put on Pradaxa, but she wasn't tested for FVL. So I wasn't aware I was potentially a FVL homo or heterozygous until my episode. There are strokes on both sides of my family two grandmothers and one grandfather; FVL may have been a contributing factor and explain my homozygous status.
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1 Reaction@aycan Thank you for sharing your experience.
I understand that Factor V Leiden can sometimes remain “silent” for decades and only become apparent later in life when additional risk factors come into play.
In my case, DNA testing confirmed that it’s genetic.
Are you being followed by a hematologist? It might be worth discussing testing for Lupus (or other clotting-related conditions) with them before reducing the dose of Rivaroxaban.
Also, have your vitamin K levels been checked?
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2 Reactions@swalex
Thank you for your questions and suggestions.
From the beginning I was tested for Lupus (Russell or anticoagulant testing) several times; always within range. I think the Vitamin K was covered in the PTT test. Other frequent tests include omocistein, D-Dimer, Ab antinucleo IgG (tested positive), Ab anticardiolipine IgG and IgM and choresterol.
I think my case is also genetic.
I am principally in the care of an angiologist.
The plan is to reduce the dose of Rivaroxaban in 1 month. So any further insights I gain in this period will help me to decide. My main motivation is the reduced risk of bleeding. My doctor is favorable, but I sense cautiously!