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Replies to "@nypara66 HU for me for 9 months. Complained about arm pain. Bleeding gums. Split tongue. Tingling..."
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (69)
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@nypara66 HU for me for 9 months. Complained about arm pain. Bleeding gums. Split tongue. Tingling in my legs and feet. Balance issues. early satiety. 15 lbs weight loss. All fell on deaf ears. The oncologist was all about my platelet numbers. (ET-jak2 and ASXL 1).
Self referred to an ET specialist at Cleveland Clinic. I felt heard ! No more HU. Trying to reduce inflammation right now and will be placed on another set of meds.
Don’t settle! Speak up. Get a second opinion from the specialist.
Replies to "@nypara66 HU for me for 9 months. Complained about arm pain. Bleeding gums. Split tongue. Tingling..."
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@alikay Sounds like you are making progress. I have been on hydroxyurea for about four years. My dosage was 1000 and then upped to 1500 a day for a short time. . It is affecting my hemoglobin and red blood cells and making them very low and therefore I am anemic. My doctor is wanting to change me to. Interferon. I understand that it makes you feel like you have the flu and really weak. I would love to hear from some people that have taken interferon and how they have done on it. Thanks so much and I hope to hear from someone.