[Sol Posner]

I started Lucpatercept more than a year ago. Initially was raising hgb to 11 and as the months went by it slowly was becoming less effective. I wasn’t really experiencing much in the way side affects in the beginning but I started getting dizzy light headed tired joint pain and chest pains and really short of breath when I would start exercising. I just thought these were part of the disease. I began to need transfusions more regularly to where the drug wasn’t really helping. Then this past Feb. there was a pause in taking it because they changed prescription provider. So a few weeks later my side affects were almost all gone. That’s when I realized it was the drug. I was getting transfusions every 4 weeks getting down to 2-3 weeks. But I sure felt better.
I decided to try again 4 weeks ago and put more time in between transfusions I got 5 weeks before I need a transfusion but the side affects are starting to return but not bad. So I decided to wait two weeks til my next injection and see how things go.
This is all my choice as there is nothing else other than stem or bone marrow therapy and I still don’t qualify. So I’m just trying to balance the drug side affects and time in between transfusions.

[Sol Posner]

Hi, I don’t know how much help this might be.
I’m still low risk for AML and was diagnosed with MDS 2017 and am transfusion dependent for almost 2 years every 2-3 months. Currently on luspatercept every 3 weeks. I really want the opportunity to get a stem cell or bone marrow trans. But apparently I’m to low risk to get it.I came across this web page and maybe it might help answer your question.
https://www.bmtinfonet.org/video/transplant-outcomes-older-adults-mds-and-aml
Wish you well
Aloha

[Sol Posner]

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.

[Author]

Posts