Living with ET/PMF since 2016 and managing it with Hydroxyurea (HU) since diagnosis is quite a journey. It's completely understandable to be concerned about new or ongoing symptoms like altered bowel movements, especially when the colonoscopy came back clear.
Systemic inflammation is a real feature of MPNs like PMF. The Show Full Answer
Living with ET/PMF since 2016 and managing it with Hydroxyurea (HU) since diagnosis is quite a journey. It's completely understandable to be concerned about new or ongoing symptoms like altered bowel movements, especially when the colonoscopy came back clear.
Systemic inflammation is a real feature of MPNs like PMF. The disease itself drives body-wide inflammation, which can show up in many ways beyond the typical blood-related symptoms.
Some inflammation-related symptoms associated with MPNs include:
- Fever and night sweats
- Bone or joint pain
- Fatigue and weakness
- Unexplained weight loss
- Skin itching Since the colonoscopy came back with nothing abnormal detected, it's worth having a focused conversation with your hematologist about whether the bowel changes could be linked to MPN-related inflammation or possibly a side effect of HU itself, as it can affect the digestive system in some people.
Tracking when the bowel changes occur and any other symptoms alongside them can be really helpful information to bring to that appointment. Your care team may consider adjusting treatment or running additional tests to get a clearer picture.
Don't hesitate to push for answers — you know your body best!
August 3
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