High Platelets : I have had p.v for 5 years on I... - Fight MPN

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High Platelets

Jrc2019 profile image
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I have had p.v for 5 years on I am currently approaching 50 platelets currently 1420 and white blood cells currently at 16.0. I am very close to the limit of having to choose some form of medication could anyone offer some form of advice please. Also would I benefit from seeing a private hemotoligst before me platelets reach 1500. Many thanks

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Jrc2019
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hunter5582 profile image
hunter5582

It sounds like it is time to consider cytoreduction. You should definitely consult with a MPn Specialist rather than a regular hematologist to ensure optimal care. This matter more than whether the hematologist is private or in the NHS, Here is a list, mpnforum.com/tsr-the-list/

There are two first-line treatment options for ET, hydroxycarbamide (AKA hydroxyurea - HU) and Pegasys (PEGylated interferon alpha 2a - PEG). HU is a form of chemotherapy (cytotoxin). PEG is an immune modulating medication. Each medication has a different risk/benefit profile. We each respond differently to these medications. It is important to educate yourself about your options before making a decision.

PEG is currently in short supply worldwide. Hopefully this will be resolved later in 2025. Meanwhile Besremi (ropeginterferon alphs 2b) is an option for some.

I was refractory to and intolerant of HU. I have done much better on the interferons (PEG/Besremi). My quality of life has improved on these medication. Please note that my response does not predict your. We are all different.

Wishing you success moving forward.

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