Reblozyl

[Massoud REAZIAT]

After I was diagnosed with MDS, my hemotologist/oncologist priscribed Reblozyl (Luspatercept) every three weeks. My hemoglobine was 8.5 at that time. with the first shot it reached 10, with second shot reached 10.3 and with third shot reached 10.5, but afterward with with 4, 5 and 6th shots my hemoglobine reduced again to 9.6 and 9.5 and eventually to 9.4. This means that I am back to the same point when I started Reblozyl.
Does anybody have a similar experience? Can anybody explain why this has happened and is thre any suggestions.
Many thanks
Massmath

[Ashley Moncrief]

Hello,

Thanks for writing in! My name is Ashley and I serve as the Director of Patient Care for the foundation. Did they ever change the dose of the Reblozyl after you started it? Up to 69% of those on this medication will need a dose increase to achieve maximum response. I would ask your physician if a dose change might be right for you.

Ashley

[Katherine Fitzsimmons]

Hello, my husband is 83 and was diagnosed with MDS EB-1 and has had Reblozyl once and is scheduled for his next shot this Thursday. He also tested positive for Covid 11 days ago. Not sure where to ask what effect Covid has on MDS but would appreciate any feedback. He is very very tired.
Thank you

[Ernie Sloan]

Hello, I have been on Reblozyl since May of 2020. My hemoglobin was 6.3 when I got my first shot. It jumped to 8.5 when I got my second shot. And it continued to improve. For a while. But it tapered back a bit. They raised my dosage to the max. And it started back up. Now, it stays in the tens most of the time. It has gone over eleven a few times, and as high as 12.3 once. But when it hits eleven or higher, I don’t get the injections that visit. I have to wait three weeks. The worst side effect is the bone and joint pain around my waist and upper legs. It can be excruciating. I can barely stand for more than a few minutes. Also, exhaustion is really bad. I fall asleep throughout the day. But, I am not sure if it is the drug or the MDS that causes that problem. But I do know that I am grateful for the drug. And really grateful the Medicare pays the unreal price to keep me alive.

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