Autoimmune Hymolytic Anemia - living with it?

Posted by CKEllis @ckellis, Dec 20, 2011

I am finally off steroids and will be stopping Rituxan soon. This after 8 years of living with AIHA. I had both a warm and a cold antibodies. I have found successful treatments, alternatives, and more….now I what to hear your story! HOW TO LIVE with a life threading illness.

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Please contact me. I have gotten 2 opinions to have my spleen removed. I am very confused as to what to do. I would like to discuss this further with you.

Thanks.

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What successful treatments did you take? We are desperate for more info. Thanks!

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@sjmilpol

Please contact me. I have gotten 2 opinions to have my spleen removed. I am very confused as to what to do. I would like to discuss this further with you.

Thanks.

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Hi Sjmilpol
I hope you’re familiar with the consequences of getting spleen removed. It reduces your immunity against certain diseases. If your situation requires it to be removed, then you need to get vaccinated against pneumococcal disease preferably prior to splenectomy.

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I was in active observation. Asymptomatic for 14 years. Sudden onset of warm AIHA. Began Ibrutinib due to marrow overcrowding. Now on for 5 weeks and HG dropped to an all time low of 6.0. Just beginning prednisone today. I’m anxious and hopeful. Please share good experiences🤗

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@sjmilpol

Please contact me. I have gotten 2 opinions to have my spleen removed. I am very confused as to what to do. I would like to discuss this further with you.

Thanks.

Jump to this post

I’ve heard spleen removal is really reserved amongst last options. Have you tried Rituxan with prednisone?

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I know this is an extremely old post. I hope you are still doing well with AIHA. I am newly diagnosed and on Ibrutinib for 5 weeks. No help yet. So added prednisone and maybe a bit of Rituxan. Thoughts?

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