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When we know that we have anemia, but we don't know which type....which blood test tells us that it is this AIHA?
My Mom and I are both anemic. Hers is due to autoimmune disease inflammation.
I don't yet know why I am anemic.
The blood test that confirms AIHA is the Coombs test. A hematoligist will know that.
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
Guys i'm lost. I have my appointment with the haematologist after the blood test. Everything started to improve DHL is better, bilirrubin as well, hemoglobin now is 10, b12 also improving since I'm gettint treatment. Levels of iron has dropped a lot, from 87 to 8. Levels of folic acid have dropped as well. The thing is they say I have no aiha, and the diagnosis is: pernicious anemia. Which is caused by an antibody that attacks the parietal cells of the stomach, they're necessary to metabolise… read more
No
I only got the camera down my mouth and they even gave me pics of tests. This Atrophic gastritis. What is it exactly? Cause i feel all the pills we are taking, that’s what is making me nauseous… read more
Hi no. They are only trying Prednisone and it’s not working
It’s going up Hemagloben blood test and then down to #78. Yesterday they gave blood transfusion.
Are you in this Ned now? And if… read more
God Bless all!
Last Spring and Summer, I was taking oral Prednisolone and later, due to that drug’s side effects, oral Medipred, (an analog of Prednisolone.)
In June, my haematologist suggested that I order Rituximab in the possible future event I suffer a relapse.
I did and I had it on hand in the refrigerator, 4 ampules, under a controlled temperature range of 02 to 08 degrees C.
As you know, Rituximab is a very serious drug given intravenously and only under strict, medical supervision
I was very… read more
Not a cure (if you learn of one, let us know!), but more than a bandaid/temporary fix in our experience. Prednisone (at least at higher doses and definitely long term), has notable immediate as well… read more
Can anyone tell me what the protocol is for pre transfusion testing in hospitals for patients that have warm AIHA or any other autoimmune anemia?
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… read more
My Mom has full blown rheumatoid arthritis, Sjogren's, and other health issues including anemia. She has many 'ologists' including hematology and rheumatologist, but all they say is that her anemia they believe to be due to her autoimmune disease, but they don't call it by this specific name AIHA. She was already on Warfarin blood thinners due to A-Fib. She's been told that the R.A. has moved into systemic autoimmune. Mom declined bone marrow biopsy, which for her at age 87 with heart… read more
There is one bone marrow biopsy tray system which is supposed to be significantly better than all the others, but how do we get our physicians to stock it and use it? I will look up the name and link… read more
I amHemolytic anemia , have fluid build up around the lungs ,on antibiotics and have blockage of oxygen from the heart and 2.5 months of no energy . What would you suggest ?
so sorry to hear you are so unwell, I am trying Manuka honey in warm skimmed milk for energy plus have been increasing my exercise daily - mainly walking a bit more each day. Hope something helps you
