Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!

Hi Misty45,
Given your report out on Hydrea & the fact that you’ve been talking it for 20 years, do you take it daily? Do you anticipate take my it for the rest of your life? While managing it for 2 decades, have you had any “episodes” (stroke, clot or heart attack)? Of course I hope not. I am asking to get a sense of the drug’s efficency?
Deeply grateful that you’re forthcoming and willing to share details of your personal experience. Thank you always.

So glad to hear you are not having symptoms and it has not morphed into leukemia. My daughter, was on a low dose of hydroxyurea for 5 months (no real side effects) - her platelets went from 1.5 million to around 800,000. Two weeks ago her dr changed her to interferon. She does not hav JAK2. She has CALR. We are waiting to see how the interferon works. Thanks for posting it helps me to hear from other people loving with ET.

I Linda. I also have ET and have been on Hydroxyurea for over 20 years as well.
Lately it has been playing havoc with my blood counts. My platelets are way down, and my white count and hemoglobin too.

Hi my name is Sylvia and I also was diagnosed with high blood platelets about I think 6 months again . Dr also prescribed hydroxy urea generic brand name (hydrae)I had about 1750high platelets It’s down around 540 at one point 380 . I am so confused as to be taking this medication . I asked what caused this to appear and she said she does not know . I notice that when I drink regular sugar , coffee it triggers my body and I get pain all over like kind of swelling pain if that makes any sense . I drink baby aspirin as well . I sometimes think I need a second opinion for I’m afraid taking hydrea might give me another form of cancer … Mysty I live in Austin now but my home town is El Paso …I’m here for you all .. u all are not alone ..