CLL complicated by autoimmune hemolytic anemia (AIHA)

Hi! I’ve been that route. The rituxan worked actually too good for me. My marrow stopped producing the immature RBCs (reticulocytes). I started procrit and may be starting a treatment for CLL. I am at Mayo right now consulting with a blood specialist. Keep in touch. I’d love to know your progress.

I am going through this exact situation now. Steroids are so intense and intolerable. I was on 30mg when I started Rituxan 4x infusion in January 23. I still had low RBCs In April they want me to try obutasamab and venetoclax for 1 year. Venetoclax is Very expensive even with my insurance. .. MUST get off steroids .. 7 months and horrible dude effects while they keep my anemia in check. Ugh.

I am In exactly your position! Rituxan didn’t work. Started obutasamab this last week and will go on Venclexta May 1. Steroids is the worst part of it. 7 months in and only tapered to 10 mg. Hair loss.. vision bad..shaky and muscle miopathy in my legs. Hip problems. Etc I have hope for my CLL but the AIHA is my threat to comfort and happiness.

I have CAD Cold Agglutinin Anemia believed to be caused by indolent CLL. No treatment at this time. Hopefully Never!!!

I was diagnosed last February with CAD. Had Rituxan and Chemo. Now they wanted to start Enjaymo and decided not to because the infusions are forever. Want to wait until my numbers go lower. So I don't know. ??????

What is CLL?

Chronic lymphocytic leukemia (also called CLL) is a cancer of the blood and bone marrow. Read more here: https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

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.

@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/

@swalex You have all the symptoms of CAD. Did they run the right tests on you for it? So many doctors are not familiar with the disease, because it is so rare. My original hematologist told me that I had Warm Agglutinin anemia, and I protested and told her NO, I have cold. So she looked at my results and said, You have cold. I have changed hematologist and really like my doctor now. He was the one that found out that I have Fac V Leiden genetic blood clotting gene.