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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Jul 18 8:22am | Replies (622)Comment receiving replies
Have been on Hydrea for 15 months take 500 mg 3 day a week. Have had random side effects that come and go. Not much hair loss not so to notice until the last month or so. Wondering if this is forever or if if may leave. I took 500mg 7days a week for the first 12 months and reduced to 3 times a week could this just being my body adjusting to the dose ?
Replies to "Have been on Hydrea for 15 months take 500 mg 3 day a week. Have had..."
@vickieannb57 I am on a larger dose of HU and have been for 8 yrs. The hair loss did reverse for me. (My hair stylist noticed it, too.) I have some digestive side effects infrequently (constipation and gas, mostly). Some people truly cannot tolerate HU. But for those who can, it's cheap and effective.
@vickieannb57 I take 500mg every three days as well. On it for 6 years no hair loss but has changed my taste and food doesn’t taste as good as it did. Will make me nauseous sometimes so I have anti nausea meds. They all have some side effects. Pick and choose. Good luck.
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@vickieannb57 seek out an MPN specialist. I to was on HU x9 months with too many side effects. My old oncologist never seemed to be “ caring” enough to address my side effects. Found a MPN specialist within 2 hour drive. What a difference. Stopped HU. Will start interferon after my body is reduced of inflammation from HU.