Side Effects – Luspatercept/Reblozyl

[Ernie Sloan]

I started on Retacrit in the fall of 2019. It did no good for hemoglobin. It stayed in the 6s and 7s. I started Reblozyl in MAY of 2020. My hemoglobin was around 6.5 when I got my first injection of Reblozyl. It came up 2 points in three weeks. Today it runs in the 10s most of the time. It has been as high as 12.1. Whenever it is over 11.0, I don’t get my injection that day. I wait three weeks.
The worst side effect is the pain in my bones, from my knees up into my hips. It is so bad it keeps me from standing long. I have lost about 50 pounds, which didn’t hurt anything. I have severe anemia and weakness. A walk to the mailbox is all I can do. I have balance issues at times. Also, a periodic cough.
On the rare occasion my hemoglobin is above 11, by the time the second three weeks rolls around, the pain in my bones is mostly gone.

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