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Originally Posted by Michelledoh2002
Hi all I'm quite new to all this and mds but my father was diagnosed with high risk mds a few weeks ago. He has not yet started treatment he is due to start azactidine but his haemaglobin levels keeps dropping even after 3 blood transfusions in 2 weeks it's still dropping has anyone else experienced this or knows what the next step will be. Is there anything else to get haemaglobin levels up, can he still start azactidine if levels keep dropping? Any help or advise would be appreciated thank you!
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Azactidine is likely to make blood counts worse before they get better, and it doesn't work quickly, so stabilizing your father's haemaglobin is a more immediate concern.
If transfusions aren't sustaining his count, the doctor may give him Epo, a man-made version of the natural hormone erythropoietin. Epo is a growth factor that can boost red blood cell production and therefore haemaglobin. In the U.S. the formulations go by names such as Aranesp, Epogen, and Procit. For the U.K. I've seen mention of the names Aranesp, Binocrit, and NeoRocormon.
The specific recommendations you get will depend on the specifics of your father's situation. Almost every case of high risk MDS differs in some way from other patients, so educating yourself will help you ask the right questions, but not always help you predict the answers.
Good luck to you and your father.