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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)
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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, 2024

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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virginiafizz | @virginiafizz | Apr 2 2:43pm

Hi I have ET with Jak 2 and take hydroxycarbamide and low dose aspirin. Had joint pain and neuropathy but since taking Hemp Oil after consulting my doctor I have no pain also do the Keyo diet which cuts out alot of sugars that can cause inflammation. Life changing still have fatigue but am more active due to no pain.

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