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How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Posted by pearly @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.

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leonard01 | @leonard01 | Dec 1, 2023
In reply to @beebo "I’m on HU too and also have a problem with a swelling in my (right) leg...." + (show)
@beebo

I’m on HU too and also have a problem with a swelling in my (right) leg. But my swelling issue predates my taking HU for PV. I had a DVT and then within 6 months had a pretty severe “soft tissue injury”to the same leg. I started using compression socks after that and they worked great. Swelling went totally away. Just this month I was on vacation at a beach and ditched the socks. Swelling came back the next day. Resumed wearing the socks and it went right away. So I guess they really do work well. Mine are blue and gray and are really comfortable. Except for being a bit of a pain to get on and off, I really do like wearing them.

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Thanks for that info! I’m some where between ET and primary milo fibrosis, so I’m considered an intermediate risk for progression.
I tend to bruise easily with any bump, and the blood seems to form hematosis in my lower legs and ankles. I also experience burning and lower leg pain. My diagnosis is about a year old, so I’m just still adjusting to all of this crazy change in life!
As a result of your comments, I will now try compressions socks This will be in hopes of increasing blood flow in my lower legs .

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flashz46 | @flashz46 | Mar 29 8:26pm

Would like to thank all for sharing their blood conditions, I'm not alone here. I was alerted of my blood platelet level at 650 early in 2023 which steadily rose to 1104 within 6 months. My Hematologist held off but now I am on 500 mg of Hydroxyurea which scared me to be on another prescription drug at 71. I have not had any serious ill effects so far but in the first hour of ingesting, I feel slightly light headed. The side effects says weight gain, I will say increased apatite as I always feel hungry. Ok.....good news after 1 month: Platelet levels have dropped to 813 from 1104 so I am feeling hopeful at this point.

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