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Anyone diagnosed with wAIHA?
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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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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4 Reactions@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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1 ReactionThanks! 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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4 ReactionsCleveland 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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4 Reactions@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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2 ReactionsI'm a 63 years old female. I was diagnosed with AHA in 1986 and 1990. I was put on a very high dose of prednisone. I recovered from AHA but the cause was never determined. I always thought is was caused by a high level of stress. I recently learned though a genetic DNA test, that I am homozygous for MTHFR which reduces my ability to process folate by 70 percent. This genetic variant is associated with autoimmune conditions. Since diagnosed with AHA, I have also had other conditions associated with that variant including miscarriage, chemical sensitivity, heart palpations, extreme fatigue, hearing loss, and recently but fortunately, now resolved anxiety and depression. Due to this condition, I now take a low dose of methyl folate and methyl B-12. This has helped a lot with my general health.
Meant to say "AIHA."