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.

lwengel | @lwengel | Oct 27, 2022

Anyone have hair loss when taking Hyderabad for PV?

betherelynda | @betherelynda | Oct 26, 2022

I take hydrea 500 mg four days per week only. Started out taking 1,000 mg 7 days a week – which lowered my white blood count below the lowest normal. Next week, I have another blood draw to see where platelets and white blood count stand after 2 months of lowering hydrea. I have no other symptoms tolerating hydrea.

dancouclanel4 | @dancouclanel4 | Oct 25, 2022

In reply to @cowestwinds "I’ve seen many who get there numbers down in the 500’s and are ok with that...." + (show)

If platelets have been monitored and risen over 3 to 4 months - i would see an oncologist - yes. Mine were in the 800 range before i started -

dancouclanel4 | @dancouclanel4 | Oct 25, 2022

In reply to @cowestwinds "Hello, I've just found out I have the Jak2 mutation and will go for a biopsy..." + (show)

I'm running into the same problem - an active site. I have the JAK2 mutation and have had a biopsy. My blood disorder is balanced with hydrea/500 mg MWF weekly and 81 mg baby aspirin daily.

dancouclanel4 | @dancouclanel4 | Oct 25, 2022

In reply to @hopeful33250 "Hello @huronshores I appreciate you posting your concerns about Hydroxyurea and the redness on your eyelids..." + (show)

I take hydrea 500 mg on MWF only. Started out taking 2 500 mg 7 days a week - which threw blood disorder 180 degree so had to balance things out. I have no symptoms tolerating hydrea.

cowestwinds | @cowestwinds | Oct 23, 2022

I’ve seen many who get there numbers down in the 500’s and are ok with that. I just found out I have Jak2 any my platelets are at 521. Should I wait to see if my numbers keep going up before I start Hydrea? Thanks

claire39 | @claire39 | Oct 21, 2022

Hello cowestwinds......I have been on Hydrea for 4 years for ET. My side effects were a bit of nausea. I also have itchiness, fatigue and headaches but I believe they are side effects of the ET. I do find that the Hydrea helps a lot with the fatigue and weakness which I have on different levels, depending on what I do in a given day. Also, I have blood work every month........Good luck

Hope you do well with your treatmant

cowestwinds | @cowestwinds | Oct 20, 2022

Hello, I've just found out I have the Jak2 mutation and will go for a biopsy soon. I have an ET that has been rising slowly the past few years and is now at 520. Doc wants to start me on Hydrea and baby asprin. I noticed the last post was Feb 21. Is there a place to go that is more active? Thanks

kathy5brothers | @kathy5brothers | Oct 10, 2022

In reply to @colleenyoung "hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20..." + (show)

I see my oncologist in two days after stopping the Hydrea until then.
They ran that lab a couple of times.

kathy5brothers | @kathy5brothers | Oct 10, 2022

In reply to @colleenyoung "hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20..." + (show)

They told me to stop the Hydrea, and made an appointment with my Oncologist in two days.

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