My friend has PV 18 years, on high doses of Hydroxyurea until it quit working so she was started on Jakalfi about 2 yrs ago, her numbers are kinda crazy, her cholesterol has gone up,up,up but she still doing pretty good at 79. She has a lot of fatigue.
Mayellen I too had iron infusions.. they increased my iron did not do much for my HGB, I have MPF with Jak2 and Myelosplastic syndrome. I take Aranesp to build RBC's and just an adult asprin for my platelet count which is staying at around 450 to 550. sometimes creeps over the 550 I think my highest was 683.
Wow! Hydrea lowered my platelet count for about 11 years, but it also lowered my RBC, WBC, and Hemoglobin. The Jakafi is controlling my platelets now, but also allowing my hemoglobin to recover to close to normal! I had unsuccessful iron infusions, but never a blood transfusion.
I had ET for 8 yrs.Took Hydrea and 81 mg aspirin until it no longer controlled my platelets.My red blood counts were so low needed transfusions
I had a BMB and found out it had mutated to MF .I have been on two different meds without much luck.Jakafi is not an option for me since I am anemic and would lower my red blood count.As far as life expectancy it is different for each individual from what I've read.Meds work for some and some they don't.
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