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I sure hope I can remember how to get back to this site... computers aren't my thing. It's been years since I looked up hemolytic anemia, and just thought I'd try again to see what's up with it. Then I found this site. I,also, am looking for answers to a very frustrating disease. What I learned from what some of you have said is that this is a rather rare disease. Didn't know that. Leave it to me to find a "rare" one. But as far as some of your comments saying you've just been diagnosed, I found out I had it about 8 years ago. I thought I had hepatitis. I was exhausted, my urine turned brown, and I turned yellow. I was on a trip and when I got home, I went to the doctors. I was immediately thrown in the hospital for iv prednisone starting at 120. My cbc was 6.6. From that point on, I've kept records of every blood test and know all of my cbc's and retics. It took 6 months for them to wean me off of prednisone. That lasted about 6 months and it came back. I went through this 3 times within 3 years. I've come to recognize when my blood goes "bad" by the pulse in my ear that drives me nuts. Then I was clean for 5 years. It came back this spring after I became very ill with the flu or some other virus. My Dr. always starts me out at 80 prednisone and it takes about 4-6 months to wean me off. But it's back again. This time my cbc is staying close to 14, which is good, but the retic won't behave. It's 4.2 right now. He also has mentioned a spleenectomy as the only other answer besides prednisone.... except this time. Now he's throwing in the option of an iv drug called rituxan. That's why I'm back on the internet. I don't like any of the options. Prednisone doesn't react badly with me, other than the weight gain...and instead of turning hairy, my hair falls out. How lovely to be a short, heavy bald woman! I'm thinking it's time to ask my doc if he knows of any doctor that specializes in this disease. Do any of you know of one??





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