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High platelets, Jak2, ET, and pre-fib new diagnosis

Blood Cancers & Disorders | Last Active: Apr 5 1:49pm | Replies (13)
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@eileen11108

Hi cowestwinds,

I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June 2022 I had daily headaches. I was taken off it for a month while I had some tests done by ENT.

I was then put back on 500 mg of HU every other day. I saw hematologist yesterday, had CBC…platelets went down second month on this regime to 434. So I can continue every other day. I have been on a blood thinner for AFib so have had that protection.

Hope you have a wonderful 2023. Eileen

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Replies to "Hi cowestwinds, I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June..."
cowestwinds | @cowestwinds | Jan 4, 2023

Thanks Eileen.

I had terrible mouth sores with HU and went off for about a month until I could get them under control. My platelets went back up to 520 but stabilized there. I went to a MP specialist and said I could drop to 500 HU a day, but because of my complications and also the fact that I have a problem with basil cells and possible skin cancers that he wants me to go to Pegasus. Waiting to see if insurance will cover.

What I did learn is that studies have shown that the numbers don't matter as much as the fact that we have the Jak2 mutation. Just having the mutation can lead to the clots, etc. So while you obviously don't want the numbers to go crazy high, you don't need to go crazy with the drugs to try to get them down into the 400's. Very interesting.

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