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Luspatercept – Feedback on beginning treatment

Tagged: Luspatercept

This topic has 3 replies, 3 voices, and was last updated 1 year, 8 months ago by Sol Posner.

Viewing 4 posts - 1 through 4 (of 4 total)

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July 17, 2022 at 4:06 pm #58420

Kenan White
Participant

I’ve just had my 2nd shot and really curious if anyone has experienced extreme fatigue – my count is 8.5 which is great for me and should be energized but feeling as tired if not more as I did at 7 or below –

July 17, 2022 at 4:24 pm #58421

Joe Catalano
Participant

Sorry to hear that you’re feeling fatigued still I’m still on watch and wait but I’m curious about Reactions. What I’ve read today is that different blood counts and hemoglobin counts affect people very differently. do you know if your blood count will go up after a while

July 17, 2022 at 4:24 pm #58422

Joe Catalano
Participant

Sorry to hear that you’re feeling fatigued still I’m still on watch and wait but I’m curious about Reactions. What I’ve read today is that different blood counts and hemoglobin counts affect people very differently. do you know if your blood count will go up after a while

July 25, 2022 at 5:58 am #58470

Sol Posner
Participant

I’ve been on it for almost a year and I have days when I’m really tired and take a few naps during the day. It’s random as to when those days apear. It has extended the time between transfusions but thats been fickle. anywhere between 2-4 months. And a couple times my red blood cell count drops within days of getting the shot. 9.3 when I got the shot, 5 days later 8.5 then a couple days after just before I get my transfusion its at 8.2.
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