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Obviously I'm not very good on finding my way to comments yet. I've checked one area on this site and my letter was the last. so this time I looked up anemia and found a couple of responses to my letter in December. I must thank everyone that has written in what they've learned about idiopathic hemolytic anemia, because I've learned lots and just came back from an appt with my doctor last night. I went armed with tons of questions. I first discovered I had this disease 8-9 years ago. My red blood cell count was 6.6 so they put me in the hospital with iv prenisone starting at 120mg. Within a day I felt great. From there, I had three bouts in three years and every time it was treated with prednisone that took about 6 months to wean me off of. Then I had a quiet period of 5 years and was shocked to have it reoccur just about a year ago. This is my second time since then and I've been on prednisone about 3 months now. So...this is what I learned from my questions last night. No, it isn't neccessarily something you're born with. It can just develop. It doesn't lead into or turn into cancer. It's something that I will always have now, but it can go dormant and not cause anymore problems (wouldn't that be nice). I am coombs direct, and I have the warm version (which he says is more respondent to treatment than the cold version)There are many treatments out there, some older school and rituxan is newer and upcoming for many blood disorders (but may not be covered by all insurances because of it's cost and life span) Removing a spleen works better with warm versions but he still doesn't want to remove my spleen yet (even though this is my 5th bout) because I respond well to prednisone. Currently, instead of hitting me with the normal high dose of 60 mg he starts with, we started with 20 every other day, it didn't correct my count, so we went to 20 a day, and are now on 30 every other day. Personally, I have no adverse side affects to it other than a bit of weight gain and tons of energy! So...other than that...I have no idea where it came from. I also got childhood arthritis when I was in the 8th grade, so when I told him that, he said I apparently have a weaker immune system...maybe my genetics are just predisposed for this. Can't say anything I've just written will help anyone, but again, I thank all of you for your comments because it sure helped me. I just figured I had screwy blood and was shocked to find that I really had a REAL DISEASE. (my doctor laughed and asked if I thought he was lying to me 8 years ago!)
good luck to everyone
Jonanie





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