Luspatercept

[Carol Morton]

I’m sorry if I’m being redundant or simply don’t know how to navigate this site. I was diagnosed with myelodysplasia in April of 2018. I feel very fortunate, not for the diagnosis, but that at this point I’m considered low risk. Nevertheless, I’m struggling with anemia and have, so far, received two Procrit shots and am due for additional shots as my hemoglobin regularly slips under 10.0.
Recently, my husband spoke with Audrey Hassan at the MDS foundation. We’re grateful for her help. She told my husband of a new medication, Luspatercept, which had helped two people she knows who relied on transfusions prior to receiving Luspatercept. Subsequent to receiving this new medicine, neither person has required transfusions for the past year. Audrey said she thought Luspatercept might be FDA approved in 2019. We fervently hope so. Has anyone heard of or been treated with Luspatercept? Thank you, Carol

[mdsfound]

Hi Carol, More information on luspatercept can be found in this recent press release: Celgene Corporation and Acceleron Pharma Announce Results of the Phase 3 MEDALIST Trial Evaluating Luspatercept in Patients with Myelodysplastic Syndromes at the ASH 2018 Plenary Session http://investor.acceleronpharma.com/news-releases/news-release-details/celgene-corporation-and-acceleron-pharma-announce-results-0. I hope this helps.

[Carol Morton]

Thank you so much. Very helpful.

Sincerely, Carol

[jennifer clark]

there was a previous post about a Japanese study using 45 mg K2 menatetranone for mds pts transfusion dependent: https://ncbi.nih.gov/pubmed/10641439
the poster said one could get the k2 menatetrenone on Amazon, Relentless Improvement. I have been taking 30 mg for four months. my platelets went from 99 to 126 and my RBC from 3.33 to 3.62. my oncologist gave me the ok to try it, and my neurologist thought it was exciting, dose of vit K below threshhold for toxcicity. he also thought it could help osteoporosis.
I am grateful for that posting.

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