what is the prognosis for aiha understanding risk factors and autoimmune hemolytic anemia | myAIHAteam
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Hi, From Spain šŸ™‹ā€ā™€ļø. Someone Has A Son With Evans Syndrome?My Son Has 8 Years Old And He Was Diagnosticated 4 Years Ago.
A myAIHAteam Member asked a question šŸ’­

Someone with Evans Sindrome?

A myAIHAteam Member

Thanks. Heā€™s doing great now. Rituxan worked and heā€™s off the Prednisone. Itā€™s a roller coaster but a less frightening one over time. Good luck with your sonā€™s challenge as well!

Has Anyone Here Tried Naturopathic Medicine To Control And/or Cure AIHA?
A myAIHAteam Member asked a question šŸ’­

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 14ā€¦ read more

A myAIHAteam Member

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 yourā€¦ read more

My Question For The Team: Has Anyone Here Had Any Actual Experience As A Recipient Of Rituximab Intravenous Infusion?
A myAIHAteam Member asked a question šŸ’­

Last Spring and Summer, I was taking oral Prednisolone and later, due to that drugā€™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 veryā€¦ read more

A myAIHAteam Member

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 wellā€¦ read more

Which Blood Test Tells Us That It Is This AIHA?
A myAIHAteam Member asked a question šŸ’­

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.

A myAIHAteam Member

The blood test that confirms AIHA is the Coombs test. A hematoligist will know that.

I'm Lost
A myAIHAteam Member asked a question šŸ’­

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 metaboliseā€¦ read more

A myAIHAteam Member

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, thatā€™s what is making me nauseousā€¦ read more

Anyone Have Aiha That Came On Suddenly
A myAIHAteam Member asked a question šŸ’­

It came on suddenly over the course of 2 days heamoglobin dropped from 8 to 5 to 3.9 . Along with severe jaundice... obviously emergency admittance into hospital and several tests done.. nothing conculsive yet over 10 transfusions done and they are helping elevate levels up to a 6 or 7... what have your experiences been ? How long were your stays ? Treatments found or causes if any ?

Any thing that could shed alight would be greatly appreciated

A myAIHAteam Member

I had Jaundice too as not only is Hemoglobin low,but it may be damaged Folate is stored in Hemoglobin,so take it daily with your Docs help.Your DNA is affected and you are VERY sick and at risk forā€¦ read more

What Experience Have Members Here Had With The Use Of Oral Prednisolone?
A myAIHAteam Member asked a question šŸ’­

How long have you been taking oral Prednisolone and at what dosage, Mg./day?
What does your schedule of decreasing dosage look like over time?
And what results have you achieved with the Prednisolone in terms of haemoglobin levels and overall wellness?
Any side effects?

A myAIHAteam Member

Hi Wendy. I am happy for you. But you still have the AIHA ???
Wendy what is the CLL???? Please
Thx much.

What Is A Common Treatment Protocol For Someone With Mixed AIHA?
A myAIHAteam Member asked a question šŸ’­

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 adventurešŸ™ˆ

A myAIHAteam Member

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 levelā€¦ read more

AIHA Diagnosed, Not On Treatment Yet. I Need Some Answers From People Who Has Been Through This.
A myAIHAteam Member asked a question šŸ’­

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 diagnosedā€¦ read more

A myAIHAteam Member

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Can Anyone Tell Me Standard Protocol For Pre Transfusion Testing In Hospitals For Patients That Have Warm AIHA ?
A myAIHAteam Member asked a question šŸ’­

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?