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Hi SIC&TIRED, I was diagnosed in November...And I also find it strange that it is idiopathic..."reason unknown"...but I guess its just that?
I have had luck with prednisone...if you want to call it that! I have had really bad side effects from it like most...I am turning in to a hairy fat woman since I have been on it. When I was in the hospital I was on 80mgs and 3mgs of folic acid a day my hematologist has tapered me down to 10mgs every other day and I am still on the 3mgs of the folic acid. My hemoglobin was at a 4 when I was diagnosed and I needed 4 blood transfusions but now my hemoglobin was at 11.8 3wks ago and on the 8th I will go in for another blood test. I know how frustrating it is not knowing why we have this...I was kind of obsessed with it after I found out I had it i would look on the internet for hours, That's how I found this site! Although its a pretty rare disease its nice to know we are not alone...look on the "Blood Disorder" thread and you will know what I am talking about. How long have you had this? like I said I just found out in November but I know I have had it a lot longer than that.
Hope to talk to you soon :bouncing:
Lori
Hi all. I was as diagnosed with "idiopathic hemolytic anemia" early February. I truly had no idea how rare this really is. Found a website that claims only 400 cases/year in Canada and 3,400 in the U.S.
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
Hi Jonanie.
So great to hear from you and that you're doing well with this latest treatment. If your coomb's direct test is positive then you're positive for the antibodies that caused the problem in the first place. The blood test for IgG, IgM apparently quantifies the amount of red blood cells that are covered with antibodies. You may want to inquire about this.
Is your anemia idiopathic, meaning no underlying cause? I find that the most frustrating. I'm told that removing your spleen only works 50% of the time. Suggest you look at the blood disorders thread (select "Message Boards" from the tabs at the top). In blood disorders you'll find a topic titled "how long hemolytic anemia....". Lots and lots of really great info there.
I sure hope this is your last relapse at least for a very very very long time.

Les
Hi Les and Jae,
How nice to hear from you. Isn't it interesting how well versed we are all becoming about a medical issue that we would never even have dreamed of! Yes, my enemia is idiopathic. Years ago when I asked my doctor if that just meant my blood was too stupid to know what to do, he said...no, they were just too stupid to know what causes it. That's why I always referred to my blood as being stupid when trying to explain this to my friends. As long as I was grateful to not have cancer, I didn't want to sound like I was looking for attention from my friends. That's why I never really looked at this as serious. Personally, I'm still going to look at it this way...I'm just going to look at it like an inconvenience... But I must say Jae, when I hear that you have had a spleenectomy and rituxan...it NO LONGER qualifies as an inconvenience. I'm very sorry for you and everyone else that is experiencing such difficulties. That's when I realized this is serious. I am in agreement with my doctor that if my body will respond to prednisone, I'll continue this route and save rituxan and a spleenectomy as options down the road. Hopefully it doesn't need to be addressed. But since I've been taking prednisone, I am very faithful to the herbs I take. Calcium for the bone damage prednisone causes, chlorophyll for my blood, and on and on. Maybe that's why I feel fine during all of this. That...and I count my lucky stars that I've been sent a disease that hasn't dibilatated me. I wish that for everyone. I'll continue to read the emails from this site and see how everyone is doing...it's nice to have a little troup out there. (my doctor says he treats about 5 of us where I live...a town of close to 100,000)
take care Jonanie





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