May 5, 2020 at 11:27 pm #50765mike abramsParticipant
Has anyone received injections of Luspatercept ? if so, what has been your experience ?May 18, 2020 at 3:33 pm #50922
Hello – I’m very interested in anyone’s experience – I’ve been waiting for approval but since it’s only been over a month I’m assuming that no one is able to comment yet. I’ve done a lot of research and it seems promising for low risk – transfusion dependent patients –June 1, 2020 at 1:12 pm #51081
Mike Abrams & Kenan White, I’m on Luspatercept,had my 3rd shot past Fri. 9wks total. Started with HB @ 8.3,bounced to 9.1 & received a transfusion 2 units 4 days later got HB to 10.8. Fatigue after transfusion no energy. My #’s,10.7,10.5,10.3,10.5,9.8 HB. My Hematrocrit was a high of 32.7,now 28.5. Hoping fatigue along with joint pain will lessen? My Dr doesn’t want to increase the mg of the shot due to side effects.Dr says my body might have to get adjusted to this drug. This drug got rave reviews, hoping it’s going to work for me? Let me know if you’re going to try it? Best of luck!June 1, 2020 at 3:44 pm #51086Janice PritchardParticipant
I have had 3 sessions of Luspatercept. I’m hoping it will work soon. An increase in dosage is due for the next round. My transfusions are occurring every week and only have been allowed 1 bag of red cells. There is a shortage of blood and this bad virus going around is causing a shortage of nurses. My red cell count has been in the 6 range. Considering I have had MDS for 12/1/2 years and I have tried EPO injections, lenalidimide and vidaza, with no improvement—-so hoping that luspatercept starts working.June 2, 2020 at 3:26 pm #51266
Janice, I’ve tried EPO injections same. Do you have any side effects? That’s my problem. I’ve had MDS for 2 yrs. So no bounce at all for you? Fingers crossed the increase will give you a boost.June 2, 2020 at 7:14 pm #51269
I have MDS with no ringed side blasts. I’ve had over 70 transfusions.
I stopped Decitabine with Dr approval after 15 treatments, mainly due to Covid 19.
I get a transfusion every 10-14 days.
My Dr. just prescribed Luspatercept.
Since I don’t have ringed side beats i assume Medic-Care will say no.
Does anyone know the cost of this drug if you have to pay for it out of pocket?
Both my local oncologist and the MDS specialist oncologist I see at UCSF think I should do this new drug.
What do I have to lose?June 2, 2020 at 8:23 pm #51270
Thanks for the update – it sounds as if it’s working. Prior to Luspatercept, what were you doing – transfusions? Did you ever use Procrit? I was diagnosed 2 years ago, low risk, and my numbers average around 7.5. I am on weekly Procrit and Zarzio injections – holding steady. Have only had one transfusion in November. I’m always looking for the other shoe to drop, and with so few options, I’m reluctant to give up this regime for one that may not work. However, I haven’t been over 8 in 2 years, so thinking that I could be at 10+ makes me ecstatic. I can live at this level, but definitely not living my ‘best life’. No complaints here – but let me know if you have more to share and BEST of luck.June 2, 2020 at 9:26 pm #51271
Best of luck with it and please update as you progress. It sounds like you have tried a lot, but in all those years, did anything work – for a while? Has your RBC always been that low? I have been gradually coming down but have held steady at 7.5 (average) with only one transfusion. But, I know this won’t last and would love to know more about your ‘journey’.June 3, 2020 at 11:39 am #51362
Len, I have hemochromatosis before this all started 2 yrs ago. As transfusions add to your iron content on spleen & liver your Dr should run a ferritin lab to see your #’s. Your Dr’s can write medicare to help with this. In the long run if this drugs works, it could be more nominal for medicare to opt for this drug,seeming the long term issues with transfusions on your organs. It’s $12k per shot + the margin markup which Orlando Health is charging $21k for me. RIPOFF… I’m 60 not on Medicare. Good luck!June 3, 2020 at 2:15 pm #51363
Has the Luspatercept been a benefit for you?
Also, my doctor does not feel writing to Medicare will help get Medicare to pay for this treatment.
Does Medicare even consider a doc accompanying letter with the prescription?June 3, 2020 at 4:36 pm #51364
Len, read my previous comments, I have INS, as I’m 60. You can call Medicare to ask? What is the protocol if you’re denied etc… Then take that info to the Dr to see if he could facilitate it.June 4, 2020 at 6:51 pm #51366
Will wonders never cease?
I just heard from my Dr’s office.
I’ve been approved for Luspatercept.
The approval came back in less then a week.
I get my first injection next Wednesday.June 5, 2020 at 8:42 am #51368
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