Luspatercept

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• May 5, 2020 at 11:27 pm #50765
  mike abrams

  Participant

  Has anyone received injections of Luspatercept ? if so, what has been your experience ?

  May 18, 2020 at 3:33 pm #50922
  Kenan White

  Participant

  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
  Jimmy Greenhut

  Participant

  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 #51086
  Janice Pritchard

  Participant

  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
  Jimmy Greenhut

  Participant

  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
  Len Tillem

  Participant

  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
  Kenan White

  Participant

  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
  Kenan White

  Participant

  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
  Jimmy Greenhut

  Participant

  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
  Len Tillem

  Participant

  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
  Jimmy Greenhut

  Participant

  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
  Len Tillem

  Participant

  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
  Jimmy Greenhut

  Participant

  Fantastic!

  June 5, 2020 at 11:00 am #51369
  mike abrams

  Participant

  cost per shot is approx $10,770 !!

  June 21, 2020 at 9:47 pm #52174
  Bob

  Participant

  Len and others taking Luspatercept. Can you give an update about Luspatercept and how it is woking for you?

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