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mike abrams
ParticipantI have been on Luspatercept for a little more than a year , have not needed transfusions at all , prior to that was getting 2 pints about every other week……..just last week had to increase dosage of Luspatercept as my RBC dropped to 7 ……..this dosage increase is the last time it can happen , if my numbers don’t hold into the 8’s at least , not sure what will happen next ……no major side affects to report.
ParticipantBobby I don’t believe the Dex does anything to help the Luspatercept , I think / believe it is given to avoid any side effects from the drug ……day after my first shot of Lusp , my face had swollen up and I was nauseous / puking , thats without the Dex ….. since using the Dex the day before and day of my shot of Lusp , no more problems !
Good luck Pal !
ParticipantAloha Bobby , the day before my shot of Luspatercept I take 2 Dexamethasone 4mg , then the morning of the shot I take 2 more . Still doing the shots every 3 weeks and I can advise that I have not needed a transfusion in over 3 months !! Before the Luspatercept , I was going for transfusions at least every other week, sometimes once a week , hated it Bobby….regarding my RBC count , just had it done today and it was 9.2 , 3 weeks ago it was 9.3 , before that 8.6 and so on…..I will be going for another shot Thursday as it is just about 3 weeks now.
That’s my story (so far) , going once every 3 weeks for 1 shot of the Luspatercept , beats the crap out of transfusions !!ParticipantOK Folks , update on Luspatercept (for me) , I started this thread back in May when I had my first shot……I had a bad reaction (face swelling , barfing etc). My Dr. at the time stopped with the Luspatercept because of the reaction and I went back to 2 shots (40,000 each) of Procrit a week . My RBC has been down all the time , I have been going for weekly transfusions, have received 22 pints of blood since the middle of May. New Dr. advised lets try Luspaterecpt again, about 3 weeks ago. This time I took some type of steroid the day before the shot and morning of…..prior to the injection of Luspatercept my RBC was 7.3 , 4 days after my RBC was 9.4 , a week or so later , last Monday was 9.3 ! Good stuff ! Feeling good with very little side effects , next shot of “L” is this next Thursday , hoping it will hold my numbers up and relief me of the transfusions . Will advise again in a couple of weeks.
Participantcost per shot is approx $10,770 !!
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