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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

My Dr is starting me on hydroxy regardless I guess because of symptoms, fatigue and headaches. Anyone else in those platelet levels and on hydroxyurea. I'm a little apprehensive about starting it especially seeing that my levels are dropping. Is it too soon?
One more thing, I credit 6 day a week cardio, 20 min on bike and 20 min on treadmill for drops in levels, also lots of water and good nutrition.

September 15, 2023 (edited)
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Answer Summary

Members responded to concerns about starting hydroxyurea despite declining platelet counts, with the strongest advice being to trust the... Read more

Members responded to concerns about starting hydroxyurea despite declining platelet counts, with the strongest advice being to trust the doctor's recommendation and not try to self-manage a serious blood condition, as many factors beyond exercise and diet influence platelet levels in essential thrombocythemia. Several members shared their personal experiences with hydroxyurea, including starting it at platelet counts ranging from 500,000 to 900,000, managing side effects like bone pain by switching to every-other-day dosing, and finding that the medication effectively stabilized their numbers within a few months. A recurring theme was that while healthy lifestyle habits like exercise and hydration support overall cardiovascular health, they do not replace medical treatment for MPNs, and key factors like age, mutation type, and bone marrow biopsy results help doctors determine the right time to begin cytoreductive therapy.

A myMPNteam Member

Hi Mark2,

I used to be a long-distance runner and was doing HIIT 4-5 times per week, I was vegetarian, hydrated well, and my platelets would never go below 500,000 not matter how healthy my lifestyle was. And I was 33-38 years old then.
It is good to take care of our health generally, it helps reduce the risk of cardiovascular issues, but there is no indication that sports have cytoreductive effects. Many factors can play a role in the number of platelets, anything from medication (for MPNs but also for other diseases, like autoimmunity and solid cancers), to infections, to changes in the disease itself.
Looking in the guidelines for treatment in ET, I could see that HU is a standard treatment in people above 60, as age is an indicator for risk in MPNs.
Did your doctor do a bone marrow biopsy?

Best wishes,
Tatiana

September 16, 2023
A myMPNteam Member

My advice is to plead with you to not to try to be your own doctor at this point. Take your medication exactly the way it has been prescribed and don’t skip any days. Of course you are nervous about starting something new, but talk with your doctor. And keep doing all of those wonderful things that you love in order to stay as fit as possible. Cheers to you, Mark!!

September 15, 2023 (edited)
A myMPNteam Member

Never make changes towards your meds unless advised by your Dr. As these are just not a normal medicine.

December 15, 2023
A myMPNteam Member

Hi Mark,
I am 79 with ET JAK2. My current platelets are 565 and I am taking 500 mg Hydroxyurea four days a week. I also take a blood thinner for AFib. I get headache issues taking Hydroxyurea so staying on low dose for now. Eileen

November 13, 2023
A myMPNteam Member

Hi Jan, you mentioned 3 family members have an MPN
I am curious if you and your family members live in close proximity of each other. Reason being is that sometimes there are risks in certain areas for radon or other chemicals that are more prevalent in areas that had mining or nuclear power plants etc.

October 29, 2023

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