Retacrit Shots

[Bippers]

I’m posting this in hopes it may help other MPN sufferers. In early December, 2023, I saw my longstanding oncologist of 20 years. My labs showed 7.2 hemoglobin I was weak and tired. He sent me to a hematologist at Emory Hospital in Atlanta. The new doctor tested me for my EPO level. Mine barely registered. He told me most healthy people have a level of 5.0 or higher. He scheduled me for a series of up to 20 weekly Retacrit shots at an out patient Emory facility. Per web searches, “Retacrit works like the human protein called Erythropoietin to help your body make RBCs. It treats anemia.” I’ve had 5 of the Retacrit shots and my hemoglobin is now at 10.4. RBC is 3.27. My energy level has jumped and I feel so much more alive. I want to do things that seemed out of the question a month ago. The Emory out patient facility checks my hemoglobin level before administering the Retacrit shot. If hemoglobin is over 10.0, no shot is given. Several weeks I haven’t received a shot.

I hope this information helps others with MPNs. Mine is Essential Thrombocythemia.

Bippers

[Cja1956]

Have you had a bone marrow biopsy? What medication are you on? I had ET for about 10 years when my hemoglobin and other counts also started to drop except for my platelets, which were pretty high. I also found a new doctor and she diagnosed me with post ET MF through a BMB and extensive bloodwork. I also received Retacrit shots and I stabilized after about 4 months. That was in 2019. If I were you, I would ask for a BMB to rule out fibrosis and possibly MF.

[Bippers in reply to Cja1956]

Hi Cja1956,

Thanks for your reply. Yes, I’ve had 4 or 5 BMBs over the past 15 years or so. Latest was in October 2023. I’m fortunate to have three hematologists. Two at private practices and a third at the VA. So I think I’m being taken care of pretty well. I hope all is well with you and may we live long lives.

Bippers

[Paul123456 in reply to Bippers]

Thanks Bippers

Have you been told why your EPO was so low if not a sign of progression? Is it related to your ET?

Best Paul

[Bippers in reply to Paul123456]

hi Paul,

My Emory Hospital hematologist tested my EPO level to see if I could be included in a study of a new GSK drug to help MPD patients. Mine was too low to be included in the study. That’s why he prescribed the retacrit shots. They seem to be working well.

I’ve had ET since 2004. Now, platelet count is in the normal range. Besides retacrit I don’t take anything else.

Thanks for inquiring….Bippers