CLL complicated by autoimmune hemolytic anemia (AIHA)

Posted by gg17 @gg17, Apr 3, 2020

Anyone dealing with AIHA? I’ve had 4 infusions of rituxan. Got hemoglobin to 12, but other markers of hemolysis still off. What next? Geri

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gg17 | @gg17 | May 27, 2020

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.

sophie601 | @sophie601 | Mar 15, 2023

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.

sophie601 | @sophie601 | Apr 16, 2023

In reply to @whoey "I am being treated for acute hemolytic anemia with Rituxan (I've had 4 infusions) and will..." + (show)

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.

emg112253 | @emg112253 | Apr 17, 2023

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

kimmariefritz | @kimmariefritz | May 12, 2023

In reply to @emg112253 "I have CAD Cold Agglutinin Anemia believed to be caused by indolent CLL. No treatment at..." + (show)

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. ??????

kimmariefritz | @kimmariefritz | May 12, 2023

What is CLL?

Colleen Young, Connect Director | @colleenyoung | May 25, 2023

In reply to @kimmariefritz "What is CLL?" + (show)

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

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