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Anyone diagnosed with warm Autoimmune Hemolytic Anemia?

Posted by weston02 @weston02, Mar 28, 2023

Interested in anyone that has been diagnosed with warm Autoimmune Hemolytic Anemia and the treatment plan you are following. Was diagnosed last September after a routine visit to primary doctor for annual exam. Had no symptoms. Six months later, after 3 blood transfusions, many tests, Prednisone treatment, and 4 infusions of Rituxan, I still have a low hemoglobin. Still do not have any overt symptoms associated with this disease, other than occasional high pulse rate.

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fergie01 | @fergie01 | Jul 13 7:10am

I was diagnosed with autoimmune hemolytic anemia 17 years ago. My hematologist gave me prednisone and after a month my blood counts were normal. I went off prednisone and my numbers went low again. My choice was to either stay on prednisone for the rest of my life or have a splenectomy. I chose splenectomy. I’ve been good ever since.

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weston02 | @weston02 | Jul 13 10:36am
In reply to @fergie01 "I was diagnosed with autoimmune hemolytic anemia 17 years ago. My hematologist gave me prednisone and..." + (show)
Profile picture for fergie01 @fergie01

I was diagnosed with autoimmune hemolytic anemia 17 years ago. My hematologist gave me prednisone and after a month my blood counts were normal. I went off prednisone and my numbers went low again. My choice was to either stay on prednisone for the rest of my life or have a splenectomy. I chose splenectomy. I’ve been good ever since.

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Thanks for feedback. So glad spleenectomy worked for you. I had read reports say that it worked in about 30% of cases so I didn't want to chance it. I was on prednisone for 17 months, overlapping with Cellcept for 12 months, and 2 rounds of Retuximab ( 4 infusions each time). After 27 months, I went into remission. Now, after 6 months off everything, the Hgb is starting to fall again, down to 11. I have blood work every 2 months now, so will have again in August and another visit to doctor. Hopefully it hasn't dropped more. I feel good and am about to start working with a functional medicine specialist to see if that helps. So far it seems to be idiopathic.

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kitoibay2 | @kitoibay2 | Jul 13 12:32pm
In reply to @fergie01 "I was diagnosed with autoimmune hemolytic anemia 17 years ago. My hematologist gave me prednisone and..." + (show)
Profile picture for fergie01 @fergie01

I was diagnosed with autoimmune hemolytic anemia 17 years ago. My hematologist gave me prednisone and after a month my blood counts were normal. I went off prednisone and my numbers went low again. My choice was to either stay on prednisone for the rest of my life or have a splenectomy. I chose splenectomy. I’ve been good ever since.

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thanks for the info. I am new to this disease.

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fergie01 | @fergie01 | Jul 13 5:31pm
In reply to @weston02 "Thanks for feedback. So glad spleenectomy worked for you. I had read reports say that it..." + (show)
Profile picture for weston02 @weston02

Thanks for feedback. So glad spleenectomy worked for you. I had read reports say that it worked in about 30% of cases so I didn't want to chance it. I was on prednisone for 17 months, overlapping with Cellcept for 12 months, and 2 rounds of Retuximab ( 4 infusions each time). After 27 months, I went into remission. Now, after 6 months off everything, the Hgb is starting to fall again, down to 11. I have blood work every 2 months now, so will have again in August and another visit to doctor. Hopefully it hasn't dropped more. I feel good and am about to start working with a functional medicine specialist to see if that helps. So far it seems to be idiopathic.

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Mine was idiopathic. I know splenectomy seems extreme, but I don’t regret my decision to have it removed.

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