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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.

Supposedly being 63 is a reason to take hydroxyurea when you have an MPN. So it's best to take that poison even though your not even supposed to handle it without gloves, what's wrong with this picture.
Of course everyone is different and please listen to your doctor but I choose to not take meds for now except daily aspirin.

September 20, 2024
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Answer Summary

Members shared diverse experiences regarding medication decisions for managing elevated platelets with MPNs, with several choosing to forgo... Read more

Members shared diverse experiences regarding medication decisions for managing elevated platelets with MPNs, with several choosing to forgo hydroxyurea in favor of daily aspirin alone while others found success with treatments like Anagrelide or Besremi after experiencing side effects or complications. Many community members described how their doctors use varying risk thresholds (some age-based at 60 or 65, others more individualized), emphasizing that platelet levels in the 400s and 500s may be manageable without aggressive treatment depending on personal health factors. A recurring theme was the balance between avoiding medication side effects and preventing serious complications like strokes or blood clots, with members stressing the importance of working closely with hematologists to find what works best for each unique situation.

A myMPNteam Member

My platelets bounce between 600 and 700 and I have only taken a baby aspirin since 2008. I'm 72 and healthy.

September 20, 2024
A myMPNteam Member

Most docs use 60 as the point where someone is considered high risk. Some use 65. Others do not use age at all, taking a more individualized approach. I prefer that approach as we all age differently. The age-based risk factor does apply to most people with MPNs, but not to all. It is an individual choice we each need to make.,

September 20, 2024
A myMPNteam Member

I agree 100% as i have mentioned before Mark, I am now 72 and only take daily aspirin.
My Hematologist said on last visit he is happy with this regime. Probably for the rest of my life. Originally I was told hydroxy ant 65 here in NZ but that was back in 2015.
I am very happy.
Have just read how interferon/ Pegasys is causing problems with the heart. Some meds are good for one part of the body but bad for another. Not a win win situation.

September 20, 2024
A myMPNteam Member

most of the time baby aspirin is enough in the first years
there is no need for other meds
but visit a Hematologist to look if blood values are stable is what i also did

September 21, 2024
A myMPNteam Member

I was diagnosed with PV at 61. I started out on aspirin and phlebotomy because I didn’t want to take meds if I could avoid. I had a hard time keeping my Hct under 45%, with phlebotomy monthly. This resulted in iron deficiency and with superficial phlebitis and eventually a deep vein thrombosis. I started on HU, but had GI issues. I started on Besremi about 6 months ago. We had to work with finding the right dosage because of anemia, but think we have found the correct dose now. Numbers look good and I am feeling better. No phlebotomy! We all have to find what works best for each of us.

September 25, 2024

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