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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.

It seems to me that the majority of adverse symptoms are actually caused by the treatments. Is that true?

A myMPNteam Member asked a question 💭
Boston, MA
August 17
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A myMPNteam Member

Interesting..... Luckily I have had no major problems since getting PV diagnosis, I resisted taking meds for almost a year until all the docs (including my accupunturist) said I should at least try the low dosage HU which I have tolerated easily. Brought my numbers down satisfactorily. These medicines are scary but if you can tolerate they do work. Also watching diet and trying to live healthfully as possible. Good luck and if you do try meds hope they work easily for you.

August 19
myMPNteam

That's a really perceptive observation, and there's definitely truth to it. With MPNs, symptoms can come from two places — the disease itself and the treatments used to manage it. It can sometimes feel like the treatments are doing more harm than good, but it's important to weigh the bigger picture.

MPN treatments are Show Full Answer

That's a really perceptive observation, and there's definitely truth to it. With MPNs, symptoms can come from two places — the disease itself and the treatments used to manage it. It can sometimes feel like the treatments are doing more harm than good, but it's important to weigh the bigger picture.

MPN treatments are designed to reduce serious risks like blood clots, disease progression, and organ damage. The side effects, while real and sometimes significant, are often manageable. Some common treatment-related side effects include:

- Fatigue — both physical and mental exhaustion
- Gastrointestinal issues — nausea, diarrhea, constipation, mouth sores
- Anemia — particularly with hydroxyurea
- Mood changes — depression, difficulty concentrating
- Sexual health changes — fertility impacts, hormonal shifts
- Skin issues — ankle ulcers (less common, around 5% of people)

A myMPNteam member shared that hydroxyurea caused significant anemia, leading to blood transfusions — a real reminder that side effects deserve attention and open conversation with your doctor.

The good news is that many side effects can be managed with lifestyle adjustments, timing of medications, or switching treatments. Never stop a treatment without consulting your doctor first, but always speak up when something feels wrong.

August 17

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