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Posted by Ray Henderson on December 19, 2000 at 10:37:02:

In Reply to: Re: cold agglutinin posted by Arita Trahan on November 18, 2000 at 21:00:28:

: : : My mother has hemolytic anemia in the form of cold agglutinin. She has had blood washes and blood transfusions and is currently taking regular doses of procrit by injection. Has anyone else out there had this disease that she can communicate with? She would like to talk to you about your treatment and prognosis.

: : My wife was diagnosed as having cold agglutinin disease about 2 years ago. She too had transfusions every two or three weeks and had a plasmaphresus(sp?). She then saw a Dr. Rosse (now retired) at Duke University who prescribed two shots weekly of 10,000i.u. Epogen, normally prescibed for kidney patients to help their bodies produce more red blood cells. Since then, her red blood count has increased and she has required no transfusions. Her current oncologist-hemotologist is Dr. Josef Prchal with the Baylor School of Medicine in Houston. I suggest you investigate this possibility if you have not tried it. Let me know if you learn of any developments in the treatment of this perplexing disease.

: : Ray Henderson

: Mr. Henderson,

: It was such a treat to read your message. My mom thinks that the Epogen shots may be the same as her Procrit, and intends to check that out with her doctor. She is currently getting 15,000 i.u. twice a week. Has your wife's doctor suggested any possible cause for this condition? My mom suspects that this may be a side effect of 4+ years of taking hormone blockers following breast cancer. Her early symptoms were blue blotchy areas on her arms and legs when she got cool. She wears long underwear constantly now. A local doctor heard Dr. Rosse speak at a convention, and it was his influence that stopped those awful blood washes and getting her off tamoxifin. My mother is in Oklahoma City and the medical attention there has not been ideal.

Dear Ms. Trahan,
Your Mother called my wife yesterday and they had a good chat. It lifted my wife's spirits to talk to someone who actually had cold agglutins also.
I think a support group would be a great idea, so if anyone reading this has cold agglutinins, please let us hear from you.

Ray Henderson
[email protected]

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