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DiscussionLiving with MDS (Myelodyplastic Syndromes)
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Replies to "I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died..."
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@teresadodson123 I'm sorry your insurance would not approved payment for Reblozyl. I was on Aranesp for about 5 years and my hemoglobin would run anywhere from 8.5 to 10.5 with fairly regular 3 week injections. About 5 years ago, my doctor told me about Reblozyl (Luspatercept). He said a doctor he attended medical school with was on the test panel for this medicine and he felt it would really help me. Fortunately, Medicare and my insurance approved payment (it is very expensive). Now my hemoglobin runs between 10.4 and 11.6, I get the injections when it is under 11.5. Also, I have no side effects. I realize everyone is different with different tolerances. I have never had to have transfusions, thank God. I'm 83 and I also have a lot of fatigue and occasional dizziness. I don't know what different insurance companies use to decide if certain meds are approved. I hope things get better for you. I am not a medical person. I just wanted to share my experience with you and hope you do not feel alone.