Home Demo › forums › Patient Message Board › Reblozyl/Luspatercept
- This topic has 5 replies, 5 voices, and was last updated 5 months ago by Robin Smith.
October 4, 2022 at 11:53 pm #58708Kenan WhiteParticipant
Just wanted to share encouraging news as it’s a tough disease and hard to treat symptoms – diagnosed in 2018 with low risk MDS – ring sideroblasts sf3b1 mutation – did well on Procrit + Zarzio for almost 4 years – functioning well at 7.5 as stayed active and improved my diet etc – plus I was diagnosed at 60 – very few transfusions (3-4) but things began to go ‘south’ and needed more frequent transfusions – every 6 weeks or so but very run down and feeling crummy – now being seen at UVA by Dr Keng – put on Luspatercept and very discouraged — at first! Horrible fatigue and nausea – felt worse than when I was severely anemic and so discouraged – after 3 shots they increased the dosage and I’m so happy now – the symptoms are gone and my count was up from 8.2 three weeks ago to 9.5 and no transfusion – I feel really good and am thankful I stuck with it – I know this may not last and I know it’s not for every variant of this disease but I pray that those of you looking for another drug will be helped by my experience – this forum has been a lifeline for me!October 5, 2022 at 8:45 am #58709RoseAnn NortonParticipant
I also have SF3B1 mutation with ring sideroblasts along with ASXL1 and have been on Neupogen and Procrit to keep my hemoglobin up. They seem to be working as my hemoglobin is in the 10 to 11 range most weeks. I have not had to have any transfusions. I was diagnosed in 2021 and have been taking the injections weekly for over a year. I am 65 this week and hoping to have many years before progression of the disease. I am glad to hear that luspatercept is working for you. That will probably be the next thing in my course of treatment. Are you still considered low risk and will this help delay possible bone marrow Transplant? Any advice you can give me to help delay progression? Thanks.October 7, 2022 at 5:57 pm #58730Robin SmithParticipant
Kenan, thank you so much for sharing your good news and I’m so happy for you that Luspatercept is not only working, but working so well for you! I was given your same diagnosis at UVA in 2019 and am currently on weekly Procrit injections that’s still working for me, however not quite as effective as when I first began the injections. Numbers are trending 8.9 to 9.3, at this time. My doctor at UVA, Dr. El Chaer, has told me my next step will also be Luspatercept. Such good news you’re experiencing a strong response. Again, thank you for posting.. RobinOctober 12, 2022 at 8:40 pm #58738Tricia DieckParticipant
Thank you for sharing, Kenan. My mom is in a similar situation with Luspatercept, however she has not turned the corner and her HGB is hovering around 7.2. She too has ring sideroblasts and the sf3b1 mutation. She has the specific MDS with 5q-. Do you have 5q- as well? Just trying to get more information to see if she may react similarly to you.October 19, 2022 at 10:04 am #58761Joe CatalanoParticipant
Can anyone share how low they allowed your hemoglobin and/or RBC to go before they begin treatment. I am on watching wait my RBC is now down to 2.32 and my hemoglobin is down to 8.4. I asked my doctor when he would be considering treatment and he said below eight. Does that sound similar to anybody else out thereOctober 19, 2022 at 4:14 pm #58763Robin SmithParticipant
Joe, my doctor at UVA told me we would discontinue the Procrit and begin Luspatercept once my hemoglobin dropped to 8. I believe I began the Procrit while hemoglobin was in the mid eights. I’ve searched my records but can’t find it so far, but I’ll keep trying and let you know. Do you know which type of treatment your doctor has in mind? I’ve done very well with Procrit for almost three years, however it is losing some of it’s effectiveness at this point.
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