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Essential thrombocythemia

Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)

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@bshattuck138

Hi Lori. Thank you sooooo much for that heart felt reply. Becky and I read it together. Lots of good points. She and I are both doing fine...just looking for a time when her platelets start heading in the right direction. In regards to that, I was wondering, perhaps more than you can answer, but wondering if HU actually lowers platelets or just it just slow the production and the ones she currently have will die off eventually.
Also, I'll start sending messages in general and you can answer when and if you can. I don't want to have you feel you're committed to answering my questions because they are addressed to you.
With that said.....THANK YOU SO VERY MUCH,
Steve and Becky

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Replies to "Hi Lori. Thank you sooooo much for that heart felt reply. Becky and I read it..."

Yes, HU lowers platelets. Mine went from a high of 800s to the 400s. It took two years to get them there, but that's where they'venstayed x 5 years. I sometimes spike up past 500, but they always go down again at next test. Hemo calls this "very stable." I do have the CALR mutation, so I am at slightly lower clot risk than JAK2 folks. I am 70 yo.

Ditto Jane's and Lori's posts!

Best on the knee looky loo.

Hi Steve, I have been playing hooky a little this weekend with my visit to Mayo-Rochester for my BMT followup Thurs and then heading north to Mpls to spend the weekend with our daughter! ☺️ I still cruise through my areas of Connect several times per day and pop in where I think I can add some information or assistance. Otherwise, you can see we have amazing members like @janemc @nohrt4me @1995victoria and so many others who have ET and taking hydroxyurea who can offer priceless first hand experience.

As @nohrt4me mentioned, HU lowers platelet levels, but it doesn’t kill off platelets in circulation. Platelets have a life span in circulating blood of about 7-10 days. Our body produces a staggering 400 Billion platelets per day. And if they’re unchecked in their production you can imagine it can potentially take time to see changes.
The mechanism behind HU is that it inhibits the formation of DNA by blocking an enzyme known as ribonucleotide reductase. This results in the decreased ability of the bone marrow to produce platelets. As mentioned it can take time, trial and error to find the right balance in dosages.

Happy to answer questions any time. If I don’t know the answers chances are we have members who can. 😉