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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.
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
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.
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?
Vietnam Chemical Exposures, but VA does not admit.
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.
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
Yesterday, a dermatologist told me I have “solar urticaria”, 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 ypu… 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 for… read more
I have sever anemia. I. Had. To. Have a blood transfusion
. 2 years. Ago. They. Say. My. Body ain't. Producing enough red blood. Cells what. Do. I. Do
See an oncologist. They really helped me a lot with getting my blood levels up and they still fall but nothing like before to get back in hospital.
