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Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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mamsgirl1998 | @mamsgirl1998 | Mar 8 9:52am

I had bloodwork done again after 1 month on Hydrea. My platelet count went back up to 1,032,000 from 1,018,000 two weeks ago. It was 1,277,000 when I stated Hydrea. My doctor increased my Hydrea to 1000mg on weekends and 500 mg weekdays. I was disappointed in my platelet increase. I guess that is normal.

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1 reply
wa34937 | @wa34937 | Mar 9 6:12am
In reply to @mamsgirl1998 "I had bloodwork done again after 1 month on Hydrea. My platelet count went back up..." + (show)
@mamsgirl1998

I had bloodwork done again after 1 month on Hydrea. My platelet count went back up to 1,032,000 from 1,018,000 two weeks ago. It was 1,277,000 when I stated Hydrea. My doctor increased my Hydrea to 1000mg on weekends and 500 mg weekdays. I was disappointed in my platelet increase. I guess that is normal.

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My count over three+years has varied, exceeded 1 mill a few times, rarely under 600. At one point as a seasonal I had two Hema's with the same therapy. I started with 500 daily which transitioned to 1000. At 1500 I had malaise and increased fatigue, now at 1000/1500 varied days. I'm on a blood thinner and lo dose. Hopefully you'll stabilize.

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1995victoria | @1995victoria | Mar 10 1:00pm

The first year on HU, my count bounced up and down.....finally stabilized after a year. Only time it took a big plunge was a week after my shingles shot, sort of scared me, thinking ET was progressing to PV, but then slowly went up but within normal range. Dr said count can vary from morning to afternoon to night....

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mamsgirl1998 | @mamsgirl1998 | Mar 10 2:51pm
In reply to @1995victoria "The first year on HU, my count bounced up and down.....finally stabilized after a year. Only..." + (show)
@1995victoria

The first year on HU, my count bounced up and down.....finally stabilized after a year. Only time it took a big plunge was a week after my shingles shot, sort of scared me, thinking ET was progressing to PV, but then slowly went up but within normal range. Dr said count can vary from morning to afternoon to night....

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Thank you. That is helpful to know.

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