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What Aspects Of AIHA Are You Grateful For And Worried About Lately?
Careful with the transfusions, Bia! I should've had only one, at the time of diagnosis; however, I had another one a little over a year later, when I was stupid enough to still have some faith in… read more
Has Anyone Had Any Experience With Using "Low Dose Naltrexone" Aka LDN To Deal With Warm Autoimmune Hemolytic Anemia?
Yes, a naturopath prescribed Low Dose Naltrexone to me. MD will never do that. It's used off label. Didn't help at all. Same goes for all other concoctions I spent about 10K on.
I've Been Out Of Work Since September 6 With AHIA That Was Changed To Evans Syndrome 2 Weeks Later.
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.
Is There An App Or Icon I Can Put On My IPad Desktop For Quick Access Without Going Through A Search Engine?
Hi, From Spain 🙋♀️. Someone Has A Son With Evans Syndrome?My Son Has 8 Years Old And He Was Diagnosticated 4 Years Ago.
Someone with Evans Sindrome?
Thanks. He’s doing great now. Rituxan worked and he’s off the Prednisone. It’s a roller coaster but a less frightening one over time. Good luck with your son’s challenge as well!
How Do You Cope With Seasonal Changes And AIHA?
I'm always confused when people on Prednisone, or any other corticosteroids, talk about "boosting" their immune systems... After all, Prednisone's job is to SUPPRESS overreacting immune system!
Anyone Have Aiha That Came On Suddenly
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
Rituxan
Anyone have experience with patient foundations or grants to help cover costs of Rituxan treatment. Thank you.
My provider contacted the drug company that makes Rituxan. I filled out a financial application and qualified to get it free. I had no insurance at the time. I'm on Medicare now which covers 80%. I… read more
What AIHA Symptoms Do You Have That You Didn’t Expect?
I have had itchy skin and allergies for some time and take anti histamine to control the itching
Has Anyone Tried "Low Dose Naltrexone" To Make The Immune System Less Active In Its Destruction Of Red Blood Cells?
Research about "Naltrexone" reveals that the use of full strength Naltrexone is a whole different area of treatment than the use of "Low Dose Naltrexone". Some studies show Low Dose Naltrexone (LDN) can be an effective treatment for AIHI.
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