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A myAIHAteam Member asked a question 💭
Lake Havasu City, AZ

My sister is newly diagnosed and the prednisone has increased her hemoglobin from 6.6 to 9.2. She is leery of Rituximab.

March 30, 2025
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Answer Summary

Members shared mixed experiences with prednisone, Rituximab, and cyclophosphamide for treating autoimmune hemolytic anemia, with several... Read more

Members shared mixed experiences with prednisone, Rituximab, and cyclophosphamide for treating autoimmune hemolytic anemia, with several noting that Rituximab was easier to tolerate than high-dose steroids and successfully raised hemoglobin levels without significant side effects. Many community members described prednisone as effective in the short term but emphasized the risks of long-term use, including bone loss, cataracts, and other complications, while one member found relief with cyclophosphamide after other treatments failed. A recurring theme was the importance of thoroughly discussing splenectomy with doctors before proceeding, as it carries permanent infection risks and does not guarantee success for everyone.

A myAIHAteam Member

Thanks for sharing your experiences. All the best to you too!

May 12, 2025
A myAIHAteam Member

#peterbrookhouzen can u tell us how much pred your sister took in what period of time? like, how long it took her to get from 6.6 to 9.2 hg and how many pills of pred and like, how many weeks or months? and what other meds she has that are for aiha? i want to know how pred works for other ppl, what amount of pred raises hg by ~ 3 points and how long it took.

November 7, 2025 (edited)
A myAIHAteam Member

Thanks. I've been reading about it, and will further discuss with my doc and surgeon. I am kinda worried.

November 6, 2025
A myAIHAteam Member

#BethWhite Make sure your doctor explained why they think splenectomy it’ll help in your case, and what other options there are first , since splenectomy is permanent and increases infection risk. It helps some people, but not everyone.

I know you’re thinking about the splenectomy, and I just wanted to share a thought. Removing the spleen can reduce red blood cell destruction in some cases, but it doesn’t cure AIHA, and the success rate isn’t 100%. Plus, without a spleen, your risk of serious infections goes up for life. It might be worth discussing carefully with your doctor why this is the best option for your situation, and what other treatments might be available before going through surgery.

November 5, 2025 (edited)
A myAIHAteam Member

Prednisone and Rituximab didn't work very well for me. After 3 months, my doc put me on cytoxan (cyclophosamide). After 3 weeks and mild side affects, I started feeling better and my hgb rose from about 7 to 10. That was in Mar 2025. Now my cytoxan dose is half, and I still have hgb at 10. I guess one can't take cytoxan for a long period of time. Since I'm still hemolysing, my doc wants to do a splenectomy.

November 4, 2025

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