I was diagnosed with MDS, specifically Refractory Anemia with Ring Sideroblasts in 2013. I became transfusion dependent 11/2 years ago. Is there anyone out there who is or has been treated with Azacytidine for RARS? Has anyone been treated for iron overload with Deferasirox?
The myelodysplastic syndromes are grouped into about 6 different categories. The category I’m in is Refractory Anemia with Ring Sideroblasts. Refractory anemia is a condition in which the bone marrow fails to produce sufficient normal red blood cells. Iron molecules, rather than helping the red blood cells to produce hemoglobin which carries oxygen to the cells of the body, simply form a ring around the nucleus of the red blood cells, causing iron overload.
Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.
Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.
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Hello @hklass. I would like to invite @dchavian, @nchase, @jaylevel1, @teammeadows, @donnaclabaugh, to this discussion as they have all discussed being diagnosed with MDS, and a few mentioned taking vidaza (Azacitidine) as well.
@hklass, if you don't mind explaining, what is the difference of MDS and MDS with refractory anemia with ring sideroblasts?
The myelodysplastic syndromes are grouped into about 6 different categories. The category I’m in is Refractory Anemia with Ring Sideroblasts. Refractory anemia is a condition in which the bone marrow fails to produce sufficient normal red blood cells. Iron molecules, rather than helping the red blood cells to produce hemoglobin which carries oxygen to the cells of the body, simply form a ring around the nucleus of the red blood cells, causing iron overload.
Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.
@hklass, here a few different discussions on Connect that were started on different MDS subjects:
– https://connect.mayoclinic.org/discussion/mds/
– https://connect.mayoclinic.org/discussion/myelodysplasia-and-skin-itching/
– https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/