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Luspatercept experience

Home forums Patient Message Board Luspatercept experience

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    Michael Busalaki

    Hi, I am 62 and in great shape for my age .I started out on procrip and my counts were in the high 7s low 8s i was getting 2 units of blood every two weeks. My DR put me on luspatercept January of 2020 one of the 1st to get it. I get my injections every 3 weeks. The outcome was i now average transfusions every 5 to 6 weeks which is a great thing. The first 4 months little side effect bone pain, numbness of the skin and slight headaches and dizziness. Now fast forwarding to the last two months still averaging transfusions every 5 to 6 weeks BUT my side effects have gotten severely worse terrible headaches 24/7 constant light headedness diarrhea and feeling run down. The only way i can describe it is if you ever had a terrible hangover times it by 100. My DR prescribed me Butal-Acet Caff for the headaches which seems to help a little. My question is anyone experiencing more side effect the longer they are on this drug.

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