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People living with ET and taking Hydrea: Anybody setting records?

Blood Cancers & Disorders | Last Active: Mar 28 11:40am | Replies (63)
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@memere09

I have been living with ET since my 50's, I am now 72. I didn't start taking any meds until I turned 60, as I was told this was a risk factor for stroke and blood clots. I have been taking hydroxyurea with an aspirin for 12 years. I am supposed to take 2 500MG capsules every day but I only take 1 as I cannot take the fatigue, drives my hematologist crazy! I have managed to live an active life without limitations until recently.

I am in otherwise good health but have recently had a hernia which I want repaired. It has now turned into an event as my platlet count with the 1 capsule of urea was 963. Surgeon won't proceed until count is under 500. So I am now on 3 capsules per day for the next few weeks. I am so tired I can't function.

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Replies to "I have been living with ET since my 50's, I am now 72. I didn't start..."
Lori, Volunteer Mentor | @loribmt | Jan 15 9:11am

Finding a balance between medications and their side effects can sure be challenging. I’m sorry to hear you’re so fatigued with taking Hydroxurea at the recommended dosage. I know right now you don’t have a choice because of the upcoming surgery. Your surgeon doesn’t want you to experience any blood clotting so it’s important to get your platelet level down to a healthy limit.
After surgery and recovery, maybe you can speak with your hematologist about adjusting your dosage to a different schedule? I know some members have mentioned their doctors have allowed them do something like alternate 1 pill per day/2 pills per day. Or 1 pill daily but twice per week they add the extra pill. It can minimize the side effects but also maintain a healthy platelet level.
In the meantime I hope your numbers get to a happy spot so that you can go ahead with your surgery! Do you have a target date for surgery?

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janemc | @janemc | Jan 15 10:22am

May your platelets continue to go down so that you can put the surgery behind you.

To better days ahead.

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