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I have Cold Agglutinin Anemia and was just was diagnosed with Fac5Leiden clotting gene. I was wondering whether that hereditary gene contributed to the Cold Agglutinin Anemia. I developed an extensive DVT in my left leg a few months ago that required surgery. And the hematologist told me that I would have to continue on Eliquis for the rest of my life because of the history of the blood clot and the Fac5Leiden gene. He ordered the blood test after I saw him after my bout with the clot and surgery.

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Replies to "I have Cold Agglutinin Anemia and was just was diagnosed with Fac5Leiden clotting gene. I was..."

@cad43
I do have Factor V Leiden and von Willebrand factor type 2 (VWF2), but I have never been diagnosed with CAD.
However, I am highly sensitive to cold temperatures and have elevated IgM levels (18.7 U/mL; reference range: 0–10 U/mL). I cannot sleep comfortably when the temperature drops below 22°C (71.6°F), need to use a heating pad to stay warm, and often have to wear a cardigan while others are comfortable in T-shirts.

Cold Agglutinin Disease (CAD) is a rare autoimmune disease in which cold temperatures trigger antibodies—usually IgM—to clump red blood cells together, causing them to break down too early and leading to anemia. Treatment usually involves avoiding cold exposure and using therapies that calm the immune system.

In very rare cases, CAD has also been linked to a Factor V inhibitor, an antibody that attacks Factor V, a protein needed for normal blood clotting. This unusual complication can increase the risk of bleeding in addition to the destruction of red blood cells.

Reference: Factor V inhibitor associated with cold agglutinin disease
https://pubmed.ncbi.nlm.nih.gov/9486926/