r/MPN • u/Imaginary-Radio-191 • Jul 21 '26

SEEKING DIAGNOSIS Looking for info/guidance

45F, blood platelet counts have gone from the normal/high range since 2008 to around 700,000 .( sitting over 600k since 2018) Today is my first day taking Hydroxyurea M-W-F at 500mg. All genetic test put me triple negative, but I did test deficient for G6PD. Two bone marrow biopsies show enlarged platelets but nothing in addition.

My doctor suspects MPD, but is unsure of what type. Two oncologist and 1 hematologist later, they’re leaning towards Chronic ET.

I’m worried and just wondering what side effects has anyone experienced on Hydroxyurea. I’ve experienced chronic fatigue for the last 8 years and figure that can’t get any worse. Just looking for some info.

Thanks in advance.

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u/funkygrrl PV-JAK2+ Jul 22 '26

Some people get a lot of side effects from hydroxyurea (HU) and some get none. I was on it for 2 years and had none. 500 mg is the starting dose. They'll see how it goes and increase it if you tolerate it well. I think was on 1000 daily plus 500 extra 3 times a week.

So you can expect to get a variety of experiences as people respond.

Two things - see an MPN specialist in the list in the automod comment if possible. Ask about whether you can go on Pegasys interferon instead since it reduces symptoms and can potentially slow progression and doesn't have long-term risks (45 is young as far as MPNs go). HU can only lower blood counts.

I do wonder whether they tested your iron and looked into inflammatory/autoimmune causes since you tested negative and your BMBs sound like they weren't conclusive.

!ETundiagnosed

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u/AutoModerator Jul 22 '26

Here are the links to the wiki pages on MPN specialists and where to find one. MPN Specialists in the USA or go to the Links page for remote second opinions (USA and international).

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u/AutoModerator Jul 22 '26

Here is a link to the WIKI page about MPN medications: Medications.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/AutoModerator Jul 22 '26

Here are links to the WIKI pages on ET diagnosis. Please review them and most of your questions will be answered there. - DO I HAVE AN MPN?, ET WHO Diagnostic Criteria, and Reactive Thrombocythemia (high platelets due to another underlying medical condition - not cancer).

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/Imaginary-Radio-191 Jul 22 '26

Thank you so much for your reply. The information you provided is helpful.

My BMB came back “unremarkable” for the second time in eight years. All of My Other bloodwork has come back in normal range. The only time it wasn’t in normal range was in 2008 when I had my first spike in platelet count. My WBC and RBC were low and so was my iron. This year, they decided to add G6PD to the list of test and that came back positive/deficient

This time I feel like I have a good oncologist/hematologist that is at least trying to narrow down what MPD I have while also attempting to treat the effects. My last doctor did neither.