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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

claire39 | @claire39 | Jul 15, 2022

In reply to @arti4 "I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants..." + (show)

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

wa34937 | @wa34937 | Jul 15, 2022

In reply to @arti4 "I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants..." + (show)

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.

Lanni Solochek | @lannisolochek | Jul 14, 2022

In reply to @arti4 "I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants..." + (show)

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?

arti4 | @arti4 | Jul 14, 2022

In reply to @arti4 "I’m newly diagnosed with ET with a JAK 2 mutation, at 69 years old. Hematologist wants..." + (show)

Sorry! This is a correction to the above: my numbers are in the high 400’s, not 500’s.

arti4 | @arti4 | Jul 14, 2022

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?

claire39 | @claire39 | Jul 10, 2022

In reply to @cblowers1 "I am on 1000 mg hydrea per day for chronic myelomonocytic leukemia and Langerhans cell hytiocytosis...." + (show)

Good morning cblowers1........thank you for your response to my question.
My new hemotologist thinks that my very low hemoglobin is due to the Hydrea and she decreased my dose to every other day. It is still the same @106 after 1 month. I have been doing great for three years and now things are changing. I welcome comments and thank you for your feedback.....Claire

cblowers1 | @cblowers1 | Jul 9, 2022

In reply to @claire39 "Hello Zimmerman......I feel good about booking my fourth vaccine.I do not know why the doctor suggested..." + (show)

I am on 1000 mg hydrea per day for chronic myelomonocytic leukemia and Langerhans cell hytiocytosis. I have had minimal side effects and good control of my blood counts and my LCH skin lesions. I was not advised by my doctors to stop the hydrea, and did not, for any of my 4 COVID vaccinations. I had a sore arm and one day slight fever with 2, 3, and 4th shots, but nothing serious and I don’t believe it to be related to the hydrea.

claire39 | @claire39 | Jul 9, 2022

In reply to @lzimmerman "I have received four Covid vaccines (Pfizer) while on 2,000 mg of Hydroxyurea for ET. I..." + (show)

Hello Zimmerman......I feel good about booking my fourth vaccine.I do not know why the doctor suggested I go off Hydrea before, but I am going to listen to what makes sense to me. I appreciate so much the feedback from you and others and wish you all the best. God bless......FROM Claire

lzimm | @lzimmerman | Jul 9, 2022

In reply to @claire39 "I booked an appointment to get the fourth vaccine. I feel more confident now that I..." + (show)

I have received four Covid vaccines (Pfizer) while on 2,000 mg of Hydroxyurea for ET. I had no problems with any of the vaccines and did not stop taking Hydroxyurea for any of them.

I have been fortunate to not have any major side effects from taking Hydroxyurea. I’ve experienced some dryness so it is important to keep hydrated. On the plus side, most of my headaches went away when I started Hydroxyurea.

claire39 | @claire39 | Jul 9, 2022

I booked an appointment to get the fourth vaccine. I feel more confident now that I have another opinion.
Thank you again for sharing.......Claire

I welcome others to share as well

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