For How Long Have You Been Living With AIHA? | myAIHAteam

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For How Long Have You Been Living With AIHA?
A myAIHAteam Member asked a question 💭
posted February 19
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A myAIHAteam Member

Wow Bia, such an experience. I hope you're a little better now. I'm not still on treatment, and my Hb is 8 last time they checked. I went today to visit another doctor for a second opinion and she says affectively I should be on treatment. So she asked my GP to send me for blood test again with the blood test petition the 1st haematologist I went gave me. But this haematologist is not going to see me until 11th March and the blood test is due on 7th. So this new haematologist want the results quicker and she is asking to do it in 3 days maximum. Because she says I should be on corticoids right now. She also added proteins to the blood test which she found were missing and she says is important to take a look at it as well.
So let's see how is going. I still feel tired. But I'm also on b12 treatment. Because I have that anemia as well at the same time. This is from another inmune disorder but from the stomach. The antibodies from the stomach attack the vitamin. The only thing I know is before I never had any disease I was pretty well and suddenly all this showed up and I feel poorly.
Have they done any examinations to you to discover the cause of you AIHA or they just diagnosed it like primary or idiopathic AIHA. I'm in so much fear I've something even worse coexisting with this.

posted February 21
A myAIHAteam Member

I have AIHA from like over 2 years ago but didn’t even know it until my Hemagloben became very low to low 70’s and I needed a blood transfusion. Which is like 1 year now that I have been very bad. They gave me prednisone but my body kept rejecting it. Like getting really sick. Until lately I got very high Diabitus and was admitted to emergency and they gave me insulin and Metaformin to lower diabitus. I am still on Metaformin and they syppped insulin. I couldn’t walk to bathroom from prednisone. I couldn’t go up to my 2nd floor house if I went out. Now that they are lowering prednisone I can walk a bit better and diabitus is going to normal. I never had Diabetes. I feel like vomiting with prednisone pills. Now that they lowering dose just a bit better but still my hemoglobin blood is going lower. Was 92 a week ago and now down to 84. So will see what they do. The Dr had mentioned to me a 6 hr I V with a medication R something can’t think of it now. I let you know on Thursday. And your self?

posted February 19

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