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I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died from MDS 30 years ago so there’s an unusual inheritance component to my disease. The only treatments available to my dad were transfusions-no drugs on the market at that time. I was monitored the first 2 years, then started EPO injections every couple of weeks. I have since been placed on Aranesp injections every 3 weeks. My hemoglobin averages about 8.5 every 3 weeks and low neutrophils sometimes. Like everyone else, I have much fatigue and the occasional dizziness and brain fog. But I fight nausea and vomiting the entire week after the injections. I have anti nausea meds but I experience side effects from them also. I took a 3 month break from treatment over the holidays. Surprisingly, my hgb counts stayed about the same. A blood transfusion was so much easier on me. I was thinking about talking to my oncologist about stopping treatment again but continue lab work once every month to monitor my blood counts. My insurance denied payment for the drug Reblozyl. Does anyone know if Medicare forces patients to be on a drug routine before they will approve a blood transfusion? I don’t feel the little benefit I get from Aranesp injections is worth being sick a couple weeks every month.

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Replies to "I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died..."

@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.