Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

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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Toe pain: People with ET may be more likely to develop gout. It's thought that the gout could be related to the inflammatory nature of ET. Gout usually affects the big toes and can be very painful. My hemo runs an EFGR test with the rest of my blood counts to monitor kidney function. It's never been off, but something to ask about.

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After taking a total of 24 Hydroxyurea 500 mg pills every other day since April 3, my platelets are back to normal, 370 down from 550. I see you are using the system to count your value of 1,183,000 where as in my counting system I have dropped 000. Thus the vast difference.

You say you are low risk maybe because of your younger age of 50 so I would not know how you could or could not be susceptible to the blood clots and bleeding characterized by ET. You say your platelets are still climbing and you may consider trying Hydroxyurea. My doctor told me that she doesn't worry until the counts go over 1M. Most of the fellow posters we read here on Mayo Connect have platelets under 1M, but many are older and are being treated with Hydroxyurea or other drugs besides aspirin. In some cases there are reported side effects which are more likely with higher doses of the drug.

In my case, I have no side effects and 1 pill every other day is considered a low dose. The typical medical treatment goal is to reduce the platelet count to help prevent blood clots, bleeding and bruising, and sometimes organ damage. The drug is very inexpensive, $7.25 for a 90 day supply , in my case 45 pills.

Your doctor's treatment goal with aspirin may be to reduce the chances of having a blood clot and not reducing the platelets. From my reading and my own experience, I am satisfied taking Hydroxyurea. And it has worked to lower my platelets in a short period of time, with no side effects, and is very inexpensive.

Hope this helps.

Happy Memorial Day !

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