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
āŗļø
Last Spring and Summer, I was taking oral Prednisolone and later, due to that drugās 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
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
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.
Vietnam Chemical Exposures, but VA does not admit.
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?
Hi Wendy. I am happy for you. But you still have the AIHA ???
Wendy what is the CLL???? Please
Thx much.
Yesterday, a dermatologist told me I have āsolar urticariaā, an immediate but temporary adverse skin reaction from exposure to direct sunlight.
Has anyone here had any experience with solar urticaria?
Mu mom had aiha over 20 years ago rhey gave her rounds of prednisolone and washwx blood transfusions. It dos not work
I askwd the dr if her spleen is sestrpying the red blooxd cells why dont ypuā¦ read more
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
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
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 sheā¦ 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 metaboliseā¦ 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, thatās what is making me nauseousā¦ read more
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
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