Hi, I am 68 years old, I have had this MPN, CALR, since 2021. Truthfully, I had it prior to that but was not diagnosed till 2021. I was started on hydroxyurea when my platelets were in the 600,000s. I was on it for one week and developed a fib. I switched doctors because they wanted to keep me on it even though I had a problem. Long story short now I see a doctor at University of Michigan who is a top-notch specialist in this problem. That makes a huge difference. I am on low-dose aspirin and I have been for a number of years now. I don’t take anything else. My von Willebrand’s is greater than 30% actually almost 60% and with that being said my doctor said I’m good to stay on the low-dose aspirin. My platelets are a little over 1 million at this point. I have no symptoms and I feel great.

When I turned age 60 and My Platlettes hit 1 million, my Dr started to treat.

Hi 👋 my platelets were 1026 and started on interferon, after 3 treatments doc put me on hydrea as they only came down by 100. Been on hydrea 6 weeks now

Hi Carol9! My platelets were at 769 when Drs advised me to take Hydroxyurea . I was only taking baby aspirin.I decided not to take Hydroxyurea and instead take Anagrelide. The Hematologist I saw were all pushing me to take Hydroxyurea basing it only on my platelet counts. They are now at 391. What is Von Willebrand and how does it work? I agree with you about seeking a specialist since it’s considered a rare disease. I’m still looking for one and it hasn’t been easy. I can’t find an MPN specialist in network and insurance won’t approve an out of network specialist. 😩 I’m so happy that you’re feeling good! 🙏🏼