About myAIHAteam
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I have now logged about 14 months of traditional, allopathic treatment since my initial diagnosis of AIHA in February, 2022
The result has been favourable in that I progressed from a haemoglobin level of around 5.0 to close to 12, with major fluctuations in between, then and now
To be honest, I went from transfusions, Prednisolone to Metapred, to tapering off of all drugs completely last August and then back to transfusions last October and finally back to Prednisolone, all in the past 14… read more
So over time prednisolone can cause serious side effects because it is a steroid. So moon face, low levels of hormones, and destruction of antibodies and the immune system are the main issues. If your… read more
I have recently learned that I have cold autoimmune hemolytic anemia as well as warm AIHA. Does treatment differ? I have been treated with prednisone, rituximab and am currently taking Azathioprine immunosuppressant. I would like to hear from anyone with a similar diagnosis. No end to the adventure🙈
I also am of the mixed up variety diagnose Jan 2023. 3 months on varying levels of steroids followed with 4 rituxin infusions one week apart. Last labs all was normal except for cold agglutinin level… read more
I enjoy reading, often audio books these days. I meditate and participate in yoga at my community studio usually 5 or 6 days a week
I enjoy painting. This year I am revisiting water colour. I… read more
Someone with Evans Sindrome?
Thanks. He’s doing great now. Rituxan worked and he’s off the Prednisone. It’s a roller coaster but a less frightening one over time. Good luck with your son’s challenge as well!
I had Cold AIHI and found that it is due to clumping of Platelets caused by a deficiency of Enzyme G6PD,which is the most common genetic enzyme deficiency.As a result,you cannot take sulfs drugs,which… read more
Hello everyone. I've just been diagnosed with AIHA. I also have b12 deficit, which it seems is not linked. I'm already on treatment with b12. My haematologist sent me to get a tomography done. Already done. Still I won't see her until 11th March. I have extensive blood test on the 7th. Lots of autoantobodies, serology, tumoral markers and so. The tomography shows spleen enlarged and cervical adenopathy. Everything I read it says treatment for AIHA must be instaured immediately. I was diagnosed… read more
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Definitely does in my case. The heat wears me out and causes my skin to rash up.
Extremely tired pained and fatigued someday preferred deal with pain over fatigue and some days vice versa. It's causes extreme depression, anxiety and loss of hope. Makes me feel crazy and… read more
Vietnam Chemical Exposures, but VA does not admit.
Are there any financial resources that anyone can suggest?
I am in Canada. Here we have Unemployment Insurance. And if we can’t work we go on it with drs letter on sick leave. I hope this helps. But in States i don’t know.
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