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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
Hi @gg17, I'd like to bring @wolfbauer @engelee and @hanark0068 into this discussion as they also have experience with autoimmune hemolytic anemia (AIHA) and may be able to share some of their experiences.
Geri, Do you have inherited or acquired AIHA? Was it discovered recently in conjunction with the diagnosis of chronic lymphocytic leukemia (CLL)?
I’ve had a CLL for greater than 14 years without symptoms, but increasing WBC and decreasing platelets and hemoglobin. In November 2019 my hemoglobin dropped from 11.1 to 8.3 and AIHA whirlwind began.
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I have acquired AIHA.
Hi I just sent another post rather than a direct response. This is my first time using this.
My hemolytic anemia was discovered thru my usual comprehensive blood test I got every year at Mayo R.i has been having a lot of fatigue and hemoglobin and hematocrit were quite low. At fist I heard it called Mast Cell disease. Then hemolytic anemia. The effect was to lower my oxygen saturation down to 83 and 84 when normal should be 98-99 percent saturation of O2 in my blood. As I understand it, my rbc’s were being dispatched by bone marrow to try to compensate for low oxygen saturation. The problem was the rbc’s were immature and not carrying enough oxygen. I was put on oxygen for awhile and saw local hematologist. Eventually, after I got my ostomies, my saturation of oxygen is now 98. I had unusual problems prior to the ostomies , very serious and causing all sorts of bizarre and serious complications.
Have you ever received rituxan or steroids for the AIHA? If not, what treatment did you have?
My MD wanted to start me on steroids but I canNOT tolerate them at all. I forget what else he put me on except 02
I am being treated for that right now- I'm in the hospital. I'd like to know more. I've had 1 treatment of rituximab.
@whoey, wow, writing to us from your hospital bed. Are you being treated for both CLL and autoimmune hemolytic anemia (AIHA)?
I am being treated for acute hemolytic anemia with Rituxan (I've had 4 infusions) and will most likely be starting Venetoclax and obutasamab soon. I learned that the anemia was caused by the CLL so I'm not sure if it's autoimmune. I'm also being weaned off of mega doses of steroids.
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.
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