When Did You Start Taking Drugs To Decrease Platelets? | myMPNteam

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When Did You Start Taking Drugs To Decrease Platelets?
A myMPNteam Member asked a question 💭

Hey lovely people, hope you’re all doing great
I want to know when did you start to take drugs to lower platelets counts? How long after diagnosis and at which platelt count? What drug did u take
Also state if you have any condition other than MPN that increase your risk.
I am on anagralide and aspirin as my platelets are over 900 but i want to ask my doctor to stop the anagrelide and only stay on aspirin.
Want to know your experience.
I am 51 wit ET (CALR+) and i also have high cholesterol… read more

posted March 27, 2023 (edited)
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A myMPNteam Member

Mark2, depending on if you have any risk factors for stroke or heart attack, ie hypertension etc…. If it were me I would not take cytoreduction medications if my platelets were in your range. You could check the NCCN Guidelines, I think they have been updated to suggest no cytoreduction unless risk factors are present. Jak2 is considered a risk factor. I see an MPN Specialist, one who has been treating MPN for quite a long time. Nit a newbie specialist. He has told me that he and his colleagues consider platelets at 600,000 or less acceptable for some patients. Also,he stresses quality of life. The side effects can be worse than the risks and any symptoms you may be having.

posted September 18, 2023
A myMPNteam Member

I was diagnosed with ET in August 2019; started on Hydrea and baby aspirin in September (platelet count at 750). Too many issues with stomach. In August 2022 was placed on Pegasys, which lowered my platelet count after the first injection. I inject every two weeks and do labs once a month. My oncologist told me I’m on cruise control now as my numbers are at 373! I have NO side effects from Pegasys and feel like I have my life back. I adopted an orphaned rescue Corgi/chihuahua puppy on June 14. He, along with my 9-year old shepherd, keep me busy with morning walks, feeding (just like an infant) and play time. It has brought me tremendous joy 🦮🐶💕

posted July 11, 2023
A myMPNteam Member

Hi everyone, I started taking HU since being diagnosed with JAK2+ and ET in June of 2019. I take HU 500mg daily along with a baby aspirin 81mg also daily. My platelets run from 550-650+.

posted November 20, 2023
A myMPNteam Member

I was diagnosed in august 2019. They started me on Hydrea (way too long on it as I had severe GI issues). August 2022, put on Pegasys with no side effects at all. My platelet count went down after my first injection of Pegasys! I started at 750,000; now am at 341,000. My oncologist said I’m on cruise control; meaning he’s happy with my current numbers. I do labs once a month. I have a family history of death by stroke so I won’t go off Pegasys, but it can put me in remission 💕

posted September 19, 2023
A myMPNteam Member

Hi Nagla,
I kinda feel the same way as you but my platelets have gone down from 497 to 447 in the last 6 months. I'm also in great health except my LDL is a little high at 101 but it was 131 several months ago because I made an effort to lower it and I'm not done yet. My Dr wants to start hydroxyurea 500 am and 500 pm. I just don't feel it's in my best interest yet to start it.
I have ET with jak2 and mpl, both with the mutations. I would love to find out what other people in my situation
are doing as far as hydroxyurea . The mid to low levels in 400s seems to me are safe especially if no clotting history. What do you think?

posted September 18, 2023

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