Anyone diagnosed with warm Autoimmune Hemolytic Anemia?

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.

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.

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

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

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.

@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!

My daily habits include waking up, doing what I can on my 34 acre ranch, volunteer on 5 boards, eating what I want (and am able to), enjoying my wife and partner in life, then in the evening look back on the day and be thankful for what I have and the people I love.

I was nosing around the internet after a recent BMB and diagnosis and found this site.

Folks new to the trials of life need to take a breath, do their research, and rely on their family and friends to help get thru whatever their particular challenge may be, Be thankful and tolerant to others. I guarantee there are souls that have more on their plate than yours.

@weston02
I had my spleen removed 30 yrs. Ago because of hemolytic anemia and my hemoglobin has remained between 13 and 15. Hermaticrite in the 40s.

@kitoibay2
Same here. One live just fine without a spleen.

I now have monthly blood tests to keep track of RBlood cells since July 1 2025. No bad results as of yet but will keep eye on this strange disease as it is said, it could return, or not. Thanks for yr input.