I have MDS/MPN overlap with Thrombocytosis. Tested positive for the JAK2 and SRSF2 gene mutations. For me, the JAK2 mutation causes a high platelet count. I was put on Hydroxyurea and my platelet count dropped from 847,000 to 224,000 within 4 months. The doctors at Sloan have not started any treating for the MDS issue as they were concerned about the high platelet count which was my worst symptom. My treatment plan going forward is rather simple. Stay on the Hydroxyurea until my overlap disease mutates. If it does then there is a possibility of some other wonder drug or a SCT depending on how the disease mutates. For now, I seem to be OK because the Hydroxyurea seems to be doing it's thing.
Hi…my name is Claire and I have jak2 mutant. Diagnosed in November 1918 and was given the medication hydroxyurea 500mg five days a week. The weakness and fatigue has greatly improved but still remain. Some days I have to mostly stay in bed because my body is so weak. For the most part I think I am doing well but I wonder if anyone else out there still has chronic weakness. Also does anyone have an occasional itch with blisters on scalp. Thank you for any information You may have