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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@claire39

Hi everyone….I have ET and have been on Hyderabad for five years. My side effects are similar to most with itchy scalp, mouth and gum sensitivity, major headaches and fatigue. I was taking one pill a day until my hemoglobin dropped very low and then the dosage was changed to five days a week.
I still have the same symptoms but not as severe. I have learned to listen to my body and just rest when I need it. God bless and good luck to all…..Claire

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Replies to "Hi everyone….I have ET and have been on Hyderabad for five years. My side effects are..."

Thank you @claire39 and @gmacookie (Helen) for also sharing your experience with HU. It’s interesting that you both had your dosages reduced too. I hope this helps @blkalydy973 feel confident in approaching her doctor to modify her dosage as well,
It’s heartwarming to see how special this community is with the willingness of so many members to share their experiences, ☺️