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Anyone diagnosed with warm Autoimmune Hemolytic Anemia?
Autoimmune Diseases | Last Active: Mar 10 2:27pm | Replies (24)Comment receiving replies
I am 75 year old male that has lived with this condition for 13 years. I have been down and up like a yoyo over that time. My numbers have been as low as 3.2 hgb when I got air lifted from my residence. I spent overall 46 days in the hospital with extreme doses of prednisone, many transfusions, retuximab, and ultimately a splenectomy. That surgery was the only way I was going to survive. The steroids are a blessing and curse. The 500mg doses destroyed my bones and have had six vertebroplasties to stabilize the fractured vertebrae in my back. All of the bad stuff happened (mainly) in 2019 and I was on the mend in 2020. I was in fact, made of steel.....until I wasn't.
There have been many changes to my treatment plan and lifestyle since 2020. I can elaborate if anyone is interested.
Replies to "I am 75 year old male that has lived with this condition for 13 years. I..."
@nacimiento Hi, thanks for sharing your story. I would be interested to learn more about your treatment plan and lifestyle since 2020, if you don't mind elaborating.
I am a 60 year old male who was diagnosed in Sept 25 with warm AIHA after emergency heart surgery due to a growth on my mitral valve. I underwent prednisone therapy and one round of 4 low dose rituximab infusions.
My hemoglobin returned to nearly normal range, but as the prednisone has been tapered it's fallen back in the range of 10.
Then in December of 2025, I tested positive for Anti Phospholipid Syndrome (APS) , which apparently caused the growth on my heart. So, now I'm on warfarin for the clotting danger caused by the APS.
I'm trying to navigate my way back into health, researching treatments, modifying lifestyle for both the immune problems and the heart issues, and figuring out the next steps for treatments for both.
If you or anyone else in the Supprt Group have been treated at the Mayo, especially in Jax, for AIHA or APS, I would love to hear if you would recommend any specific Doctor or have any other suggestions for treatments or lifestyle.
Thanks in advance.
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@nacimiento Welcome to Mayo Clinic Connect! You’ve been through everything but you still have a great spirit and attitude.Do you have daily habits that you have to follow? Wow, you have really made my day!
So, how did you find Mayo Clinic Connect? I’m so glad that you found us because your positive attitude will surely help others!