INCREDIBLE DRUG – REBLOZYL ((luspatercept)t)
October 23, 2020 at 1:11 pm #53225namllits2002Participant
I am a low risk MDS 75 yo patient, with ringed sideroblasts proven in a bone marrow biopsy. Recently, I no longer had any response to Procrit, so I became transfusion dependent (3 transfusions to date). I consulted with Moffitt Cancer as to what course of action I could take, and after a teleconference, they recommended that I speak to my local hematologist about being put on Reblozyl. My hematologist was not familiar with the drug, but after a lot of insistence he decided to submit a ‘prior approval’ to my insurance carrier, United Health Care. As this is a very expensive drug, i.e. $10000 every 3 weeks, the insurance carrier naturally turned it down.
I had had a recent bone marrow biopsy, so that is why I consulted with Moffitt which is one of the leading centers of expertise in MDS, and they reviewed the pathology and provided documentation that I was the exact candidate, so UHC gave prior approval for the balance of this year. Concurrently, I put in for patient financial assistance to Celgene, the manufacturer, and after submitting my entire financial history, (they have a support site) they approved the drug FOR FREE.
So, I received my first shot almost 3 weeks ago, and I have to tell you the results were awesome. I had the best lab values I had had in over a year, my platelet count which was in the 50’s almost doubled, and my hemoglobin jumped from 7.2 (I was ready for another blood transfusion) jumped to 8.2 . As predicted, my vaults dropped slightly 2 weeks after the first shot, which is normal as this is not a cure, but a replacement for blood transfusions. My next shot is due soon (3 weeks after the first shot) and I am sure my values will have declined further, as it seems 3 weeks is the efficacy window.
In closing, this is an awesome drug designed to eliminate blood transfusions (worked in clinical trials 50% of the time in preventing or minimizing transfusions), but you may have to fight to get both your doctor and the insurance company to approve it. However the good news is, if you meet the financial ‘window’ i.e. less than 8 times the poverty level, they will probably approve it if you have the EXACT indication.
I hope anyone like me will persist and demand treatment, as it is really an incredible drug – changed my life.October 23, 2020 at 3:16 pm #53228Kathie WolfParticipant
That’s awesome! And a great response that will hopefully get even better!January 28, 2021 at 11:59 pm #53979Charles RosenParticipant
That’s great for you, a wonderful experience. However, Luspatercept in clinical trials was only successful in 38% of those who took it, 62% did not have positive results, or results warranting continuing the treatment. In my own case I was given the drug when it came off clinical trials, Medicare thankfully paid for it. While I had some limited success early on, after 10 cycles I was not doing any better — had to have 2 units every three weeks — and the side effects from the medication were difficult. It made me even more tired than I usually am from the MDS, joint pain was increased dramatically, etc. I am now off the treatment, “cleansing” my body and deciding with my doctor what’s next. From my experience, if it works, and it takes some time to find out if that’s the case, than it’s a great drug. But, unfortunately, the overwhelming number of MDS patients with Ringed Sideroblasts (RARS) do not necessarily benefit. This sharing of info is really important.
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