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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)
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@jacquelineh

Started Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse the Hydroxy symptoms get … mainly headaches really …which I already had before treatment but they initially eased on Hydroxy. Brain fog comes and goes.
I appreciate your interest. Easy to feel lonely in this, down under.

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Replies to "Started Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse..."
Lori, Volunteer Mentor | @loribmt | Jul 12, 2023

Hi @jacqueline, I hope you’re finding out that you’re never alone now that you’re joined our Connect group! We’re like a big ol family sitting around the table drinking coffee, tea…and I’m sure we’re snaking on healthy foods. 😂

I’ve found a couple of conversations in the forum with other members who take hydroxuryea. They are not all ET patients as hydroxy is used across several blood disorders. But some of the members have side effects including headaches.

Here are a few discussions for you to pursue.
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…

https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
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This discussion with @dale1k @nypara66
@1995victoria robert3861 (who both have ET)
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/

One thing that has worked for other members is to speak with their doctors about perhaps lowering the dosage. Have you told your doctor about your recurrent headaches?

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eileen11108 | @eileen11108 | Jul 13, 2023

I also have headache issues with Hydroxyurea. I am now only taking 500:mg on Mon/Wed/Fri. I still have headaches but usually just mild. My platelets are down to 509 but my hematologist wants to get them lower. Some talk about Anagrelide. My next lab is in six weeks.

Best wishes, Eileen

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