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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 10, 2022
In reply to @kathy5brothers "I’ve been on Hydroxyurea for 20 years. Last Friday I had bloodwork which showed my white..." + (show)
@kathy5brothers

I’ve been on Hydroxyurea for 20 years.
Last Friday I had bloodwork which showed my white count at 2.2 and red count at 1.9. Other Value vet so we’re also very low.
What’s up with these results?

Jump to this post

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20 years to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

I did this so fellow members like @pearly @lzimmerman @betherelynda @claire39 @nohrt4me @huronshores @markdi @dwlowrance @wa34937 @stevehurlburt would see your post and you can connect with them more easily.

Kathy, has something else in your health changed recently? Did you doctor order another round of blood tests to see if this may have been an anomoly or lab error?

REPLY
3 replies
wa34937 | @wa34937 | 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)
@colleenyoung

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20 years to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

I did this so fellow members like @pearly @lzimmerman @betherelynda @claire39 @nohrt4me @huronshores @markdi @dwlowrance @wa34937 @stevehurlburt would see your post and you can connect with them more easily.

Kathy, has something else in your health changed recently? Did you doctor order another round of blood tests to see if this may have been an anomoly or lab error?

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After 3 yrs on hydroxy, WBC 4.0 RBC 3.8. I'm taking 1,000 mg daily. When my platelets dropped below 500 my hema cut back on the dosage and it hit 760 after 6 weeks. My retest was delayed by Ian, hoping I'm near normal again.

REPLY
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)
@colleenyoung

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20 years to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

I did this so fellow members like @pearly @lzimmerman @betherelynda @claire39 @nohrt4me @huronshores @markdi @dwlowrance @wa34937 @stevehurlburt would see your post and you can connect with them more easily.

Kathy, has something else in your health changed recently? Did you doctor order another round of blood tests to see if this may have been an anomoly or lab error?

Jump to this post

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

REPLY
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)
@colleenyoung

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20 years to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

I did this so fellow members like @pearly @lzimmerman @betherelynda @claire39 @nohrt4me @huronshores @markdi @dwlowrance @wa34937 @stevehurlburt would see your post and you can connect with them more easily.

Kathy, has something else in your health changed recently? Did you doctor order another round of blood tests to see if this may have been an anomoly or lab error?

Jump to this post

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

REPLY
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

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1 reply
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

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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

REPLY
2 replies
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)
@hopeful33250

Hello @huronshores

I appreciate you posting your concerns about Hydroxyurea and the redness on your eyelids and eye tissue.

You do not mention if you are taking this medicine as an IV infusion or as an oral medication, nor how long you have been taking Hydroxyurea. I did, however, find some information on Mayo's website regarding possible side effects of this med if you are taking it orally. Here is the link, 65https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109.

As I read the article I did not see the redness of the eyes mentioned, however, everyone has different reactions to meds.

I would like to invite @patowen1 and @janemichele to this discussion as they are also taking this med.

Did this redness start soon after you started taking Hydroxyurea? Have you discussed this problem with your doctor or pharmacist yet?

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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.

REPLY
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)
@cowestwinds

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

Jump to this post

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.

REPLY
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)
@cowestwinds

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

Jump to this post

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 -

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