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pearly
@pearly

Posts: 5
Joined: Apr 09, 2017

Side effects of Hydroxyurea, ET

Posted by @pearly, Apr 9, 2017

I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s. Developed peripheral neuropathy & pain left leg, hip to foot. Oncologist thinks due to arthritis back per X-ray, wondered if others have this also, maybe due to the disease or meds?. Dr. says rare disease so difficult to predict outcome/symptoms. Anyone know of support group in Seattle area for this? Have called the local hospitals, cancer lifeline, etc.; no positive results.

REPLY

Welcome to Connect, @pearly, and thank you for sharing your history.

Essential thrombocythaemia (ET) is indeed a rare chronic disease, and while I search for Connect members who have some information about the Seattle area, you may wish to view this past discussion on essential thrombocythemia (ET): Essential thrombocythemia: http://mayocl.in/2ph8TpN
I hope @twhite @piglit @deborahgrace @tessa will return to share some insights.

In this discussion, “Myelofibrosis w/ JAK2 mutation,” http://mayocl.in/2oe4PaE, @wellness3070 @susanvij @bijou discuss their experience with hydroxyurea.
And, here is some information from Mayo Clinic as well:
Hydroxyurea: http://mayocl.in/2oSw3GB
Essential Thrombocytemia: http://mayocl.in/2odW8gx

@pearly, have you had any clotting complications from ET? How are you managing the peripheral neuropathy?

@kanaazpereira

Welcome to Connect, @pearly, and thank you for sharing your history.

Essential thrombocythaemia (ET) is indeed a rare chronic disease, and while I search for Connect members who have some information about the Seattle area, you may wish to view this past discussion on essential thrombocythemia (ET): Essential thrombocythemia: http://mayocl.in/2ph8TpN
I hope @twhite @piglit @deborahgrace @tessa will return to share some insights.

In this discussion, “Myelofibrosis w/ JAK2 mutation,” http://mayocl.in/2oe4PaE, @wellness3070 @susanvij @bijou discuss their experience with hydroxyurea.
And, here is some information from Mayo Clinic as well:
Hydroxyurea: http://mayocl.in/2oSw3GB
Essential Thrombocytemia: http://mayocl.in/2odW8gx

@pearly, have you had any clotting complications from ET? How are you managing the peripheral neuropathy?

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Thank you for the info. Initially, Sept, 2016 my platelet count was in the millions & I had what I thought were TIAs — dizziness, visual disturbances, numbness/tingling 3 fingers lt hand — which were temporary, maybe 3 minutes at a time or so, but became more frequent and led me to seek medical help. My oncologist does not think these were TIAs but whatever they were, they were relieved when he put me on a baby ASA/day and the hydroxyurea. He started the hydroxyurea 500 1q3days for 2months, then bid 2 months, now tid for 3months. He thinks the Lt leg peripheral neuropathy probably not due to the ET, and if not relieved in a couple months will order some MRIs & PT. Platelets gradually going down. Wondered if anyone else had these symptoms?

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