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Anyone diagnosed with wAIHA?

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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coldagglutinin01 | @coldagglutinin01 | Mar 29, 2023

Facebook has a Waiha. Group I would join and read other’s experience and suggestions. There are other treatments Rituximb plus other drugs.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 30, 2023

@weston02 Gee, you really had me stumped for awhile! I'd like to bring @wolfbauer @engelee and @hanark0068 into this discussion as they also have experience with autoimmune hemolytic anemia (AIHA) and may be able to share some of their experiences. I don’t know if they are still active, but we can hope so.
https://my.clevelandclinic.org/health/diseases/22349-autoimmune-hemolytic-anemia
What type of specialist is following you currently?

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weston02 | @weston02 | Mar 30, 2023
In reply to @coldagglutinin01 "Facebook has a Waiha. Group I would join and read other’s experience and suggestions. There are..." + (show)
@coldagglutinin01

Facebook has a Waiha. Group I would join and read other’s experience and suggestions. There are other treatments Rituximb plus other drugs.

Jump to this post

Thanks! I did find the group and had joined it. They just had their first national conference last weekend in New Orleans. Really wanted to attend for more info but had just finished the Rituxan and thought I was a little too immunocompromised to be traveling. They had 50 in attendance.

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weston02 | @weston02 | Mar 30, 2023
In reply to @becsbuddy "@weston02 Gee, you really had me stumped for awhile! I'd like to bring @wolfbauer @engelee and..." + (show)
@becsbuddy

@weston02 Gee, you really had me stumped for awhile! I'd like to bring @wolfbauer @engelee and @hanark0068 into this discussion as they also have experience with autoimmune hemolytic anemia (AIHA) and may be able to share some of their experiences. I don’t know if they are still active, but we can hope so.
https://my.clevelandclinic.org/health/diseases/22349-autoimmune-hemolytic-anemia
What type of specialist is following you currently?

Jump to this post

Cleveland Clinic does have a great explanation of the disease. This is what I sent to my kids so they would understand what I was going through when it started back in September. I'm working with a hematologist. I'm really interested in exploring information regarding diet as well. I try do a lot of online research. It mostly tells you what it is and the typical protocol most are following, but it's pretty rare and still not a lot of treatment information out there. There are a lot of clinical trials happening and that's encouraging.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 30, 2023
In reply to @weston02 "Cleveland Clinic does have a great explanation of the disease. This is what I sent to..." + (show)
@weston02

Cleveland Clinic does have a great explanation of the disease. This is what I sent to my kids so they would understand what I was going through when it started back in September. I'm working with a hematologist. I'm really interested in exploring information regarding diet as well. I try do a lot of online research. It mostly tells you what it is and the typical protocol most are following, but it's pretty rare and still not a lot of treatment information out there. There are a lot of clinical trials happening and that's encouraging.

Jump to this post

@weston02 Since you like to do research, have you tried using google search? You might also try https://www.immunology.org/publications/journals
The problem with most autoimmune diseases is that there is very little research.
Let me know what you learn and where it was published, so i can save it

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