My husband has MDS- RARS with multilinear cytopenias. He was dx in 2005 but he has had anemia for more than 10 yrs. He was diagnosised and started on Arenesp and told he would need to start either Vidaza or Revlimed ASAP. We were moving and obtained a second opinion.
We are so glad he is being treated in Birmingham. He had another bone marrow which again confirmed the diagnosis but also was able to continue with Arenesp until it nolonger proved effective.(nearly 18months) Hubby became transfusion dependent and was started on Vidaza sq 7 days/28 day cycle. WOW we saw changes in just a few weeks and he was off transfusions and is still recieving Vidaza a year later. Blood levels are back up. Oddly while being transfused his ferritin stayed pretty consistant between1800-2000 so he never was started on chelation tx. He discussed waiting until it was>than 2500.
Well this month he jumped to >3500 in 2 months.
Unsure why the sudden change. So he starts Exjade po as soon as all the paperwork is filed and we recieve the medication.
Don't know much about iron overload.(Nor Exjade for that matter) "They", all the articles talk about it, write about it and the symptoms which are so like the MDS symptoms....just one more hurddle to climb.
Any suggestion from those on chelation tx before he start?