Luspatercept Reblozyl

[buddy west]

Has anyone on wait and watch low risk mds, used this drug to improve numbers?

[Dara Robinson]

I have and all I kept saying to myself was to just die already. Although my doc says everyone responds differently. Not sure what wait or watch low risk mds means. None of the drugs that medicaid approves for me will work so now I am on transfusions only.

[Karen LaSota]

Tried this medication and it did not have good results. Side effects were significant. Kidney values are finally improving after stopping the drug for 10 weeks. On scan, a splenic infarct showed up after starting this drug. Because the clinical trials were small – there probably will be many more adverse effects as time goes on.
The oncologist did not believe that any of the side effects were related to the Reblozyl at first. I’m thinking patients need to report side effects themselves to FDA since we can’t count on accurate information from the MDs prescribing the drugs.
For low-risk, we are now trying decitabine.

[Robin Smith]

Run a search of luspatercept using the Forum Search box. Everyone does respond differently to almost all these medications with so many various factors coming into play. However, some forum members have had very positive results with luspatercept. I’m currently two years into thirty units of weekly Procrit. My doctor at UVA has mentioned that my next step will most likely be luspatercept. I’ve experienced good results with Procrit and have been able to live a relatively normal life, for which I’m enormously grateful. Thinking sooner or later I’ll be seeing how it goes with luspatercept. I’m remaining cautiously hopeful. If you do try it, let us know how it’s going. Stay well, Robin

[buddy west]

Thanks Robin, I’m going to UVA this week to see Dr Keng for my first visit

[Robin Smith]

Fingers crossed for you and sending much luck. Hang in there.. none of this is easy. I think you’ll really like UVA though.. let us know how it goes.

[mike abrams]

I 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.

[Madeline Ruggles]

My husband has MDS with Anemia. Has been treated for the past two years. First with transfusions every two weeks. Initially he was put on Procrit with no change. After so many transfusions he had iron overload and was given Exjade. Which brought the iron back down within the normal range. In November 2020 he /was started on Reblozl. Reblozl, for him it seemed like a wonder drug. He received an injection on 75 mg. Every 3 weeks. For over a year he had not received a transfusion. And had no side affects. However, after a year on Reblozl his HGB started dropping. And he started receiving transfusion again. His HGB is now 6.0.
It’s a puzzle as to why even after a transfusion his body does not hold on to the blood. He’s had a scan of his spleen and liver. Both are normal. He has just started receiving INQOVI (a chemo drug) which cased his Platelets to drop to 58.

Has anyone out there had this similar reaction? Our oncologists are all scratching their collective heads.

[Jimmy Greenhut]

It’s called refractory anemia for me. You might have the same? See yes to drugs, says no, says just for a year a decade. There’s a small % who make it TI. Mutations play a factor amongst other flags. Do your DD. Frustrating, causing heart PVC, mildly enlarged spleen, not including fatigue and stamina. Peeps have it a lot worse on this site. Frustrating is best I can describe it.
Best of luck.
Jimmy

[Will Bennet]

Is a bone marrow transplant still on the table for those that forgo it to use various treatments for many years until they stop working and their HGB number is low? Or can you only do a bone marrow transplant from early on?

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