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Blood Cancers & Disorders | Last Active: Jan 11 9:18pm | Replies (83)
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@shoch1957 Myelodyplastic syndromes, or MDS are a group of blood disorders where the blood-forming cells in the bone marrow become abnormal, resulting in the marrow not making enough healthy new blood cells. This leads to low levels of one or more types of blood cells.
In your case it appears to be your red blood cells not keeping up the pace. They may defective, not be able to mature properly so they die off faster than usual, or not being produced in the numbers to maintain a normal level. This can cause anemia in MDS patients. Which you’re experiencing.
There are medications that can help with anemia such as growth factor drugs which promote red blood cell development. There are also drugs, such as Luspatercept, that help stimulate blood cells to mature which can reduce the need for frequent blood transfusions. So by taking that medication, more of your red blood cells may reach maturity. The life spans of the cells may vary causing the yo-yo in results and they may not all be healthy, effective cells. But because your hemoglobin remains consistently below what’s considered the normal range for a male (13-15 g/dL), those symptoms of anemia, being breathless and fatigued are also going to linger.
Not everyone will experience the same degree of symptoms with mild to medium anemia. For some of us, like you and myself, we may become aware much earlier of our lack of breath, (being air hungry) and heart racing at reduced hgb levels than others with the same numbers.
It’s certainly not helpful to have your doctor telling you that you’re the only one feeling this! Obviously, that’s not so. Many of us have gone through the same thing!
Wishing you continued success with the Luspatercept. I from what I’ve been reading it’s been successful for treating anemia in early treatment for low risk MDS patients!
Have a lovely holiday season!