cold agglutinin Hemolytic anemia - Maybe it is more common than thought

Cold Agglutinin Hemolytic Anemia

Hi...I have cold agglutinin hemolytic anemia. I have had it for a year and the docs think it was caused by a mycoplasma infection or ebv. My blood counts have been very low, but I have avoided transfusions.

When my fingers, toes, ears or nose gets cold, a purple color will appear and I will loose red blood cells. Sometimes I see it in the top of my legs. I have been on cyclosporine pills and cytoxan chemo drugs. They didn't work. Now, I have been getting Rituxan IV therapy. I have been told that it is a RARE disease and hard to treat.

I have had horrible night sweats and hot flashes. (combination of anemia and the chemo induced menopause) Does anyone else out there have this disease....I would love to hear from you. -fotolady001

02-22-2004

Dear Maggie

Registered User

Join Date: Jan 2004

Posts: 65

Low counts for white, red and platelets?

Were you ever affected by oil exposure? Benzene is said to cause a drop in each of these.

Whole blood transfusion worked the best for one may who was affected not by oil, but by 2-butoxyethanol (only red blood cell damage) Just a thought.

May I ask, "Were you a gulf war vet?"

This post http://www.healthboards.com/boards/showthread.php?p=871336#post871336

Other posts http://www.healthboards.com/boards/member.php?u=99693

I went to healthboards.com and ended up posting about 380 posts ... mostly on the harm of 2-butoxyethanol everywhere I recognized it.

I was upset with them a month ago for banning a gulf war vet on his first post, and said so; which got me banned, too. (Who cares?)

Walter Reid Army Medical Center stated that the 'gulf war syndrome' vets are no more harmed than the general population ... and I was just checking around to see if that were so.

I think it is. But not because neither is harmed ... BOTH are!

Margaret 10-23-04