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
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
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 14… 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 your… 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.
I had 4 doses of Rituximab 6 months ago. Now my blood work still shows decreased haptoglobin levels. Was/is anyone experiencing something similar? How long did it take for your haptoglobin to reach normal levels? Just so worried that this is a sign of ongoing hemolysis…
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
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 diagnosed… read more
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An article the other day mentioned 6 things to try after these two treatments. One was cyclosporine. It was an article on this website.