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How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
Blood Cancers & Disorders | Last Active: Mar 29 8:26pm | Replies (113)Comment receiving replies
I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants me to start Hydroxyurea every other day. But my numbers are low, only in the upper 500’s. I think it’s early and extreme to take a drug that, frankly, seems scary to me. I can’t seem to get a straight answer to why a low dose aspirin isn’t recommended instead. Aspirin wasn’t even mentioned. Are there any others out there with similar numbers taking Hydroxyurea?
Replies to "I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants..."
Hi @arti4 - thanks for joining us here at Mayo Clinic Connect. I know that taking those very intense drugs can be scary and can come with a lot of different effects.
You may want to read through some of the comments on this thread, which has some conversation about the effectiveness of aspirin for ET: https://connect.mayoclinic.org/discussion/high-platelet-count/
I'm sure you've done plenty of reading, but I thought this document might also be helpful to read more about different drug therapy options: https://www.lls.org/sites/default/files/file_assets/essentialprimarythrombocythemia.pdf
Can you share more about your concerns with starting Hydroxyurea?
2.5 years on Hydroxy with two Hematologists (seasonal resident). Started with reading in the 800's, tried to control it with 500mg, edged up over a million a couple times, went to 750, now at 1,000mg for a year, I'm in the high normal range. 75, Xarelto for a year due to cardiac issues, stopped the lo dose after recent reports of incidence of brain bleed. Initially I was fatigued, possibly fogged but now, other than losing my hair EEK! I have adjusted to it. I have the rarer mclr mutation.
Good morning wa34937......I too have ET and have been taking 500mg of Hydrea daily for almost 4 years, also 80mg of aspirin. I still have fatigue but in different degrees. I have not lost any hair. I do have some itchiness and headaches but mostly doing well with exception of low hemoglobin that started two months ago. Having some trouble bringing it up to were it should be. Good luck with your treatment.....Claire39
Hydroxy is a carcinogen, I think it has exacerbated my sensitivity to sun. I had early melanoma removed last year, way beyond a simple removal, and let's just say I get a full body scan every six months. Everything has side effects. I'm getting blood draws every six weeks, my Hematol monitors my blood counts and says I'm ok, but he didn't see the melanoma coming? Life is good!
Wa34937, so sorry to hear about your hair loss and skin cancer. This is exactly why I’m hesitant to start the Hydroxyurea! It’s a powerful drug and, (as stated in my correction) my platelets are only in the upper 400 range and have been that way for 4 yrs. I think this drug is overkill in this situation. I’m attempting a second opinion at this point. Thanks for the input.
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Sorry! This is a correction to the above: my numbers are in the high 400’s, not 500’s.