Diagnosed with Polythemia Vera in August 2024

[Froggy64]

I have had high white blood cells and high red blood cells since 2009. Finally found an awesome Oncologist Hematologist in 2016. She has been monitoring me since 2016. Finally in August 2024 she said it was time for medication. She put me on Hydroyurea. 3 weeks later I developed joint pain in my shoulder, elbow, and wrist. Only on the right side. Went to doc She said stop medication, and referred me to a Cardiologist, and a Rheumatologist. After stopping medication within 3 days the pain in my joints was gone. Saw the Cardiologist she looked at me and said you do realize those symptoms have nothing to do with your heart. Proceeded to refer me for a stress test and a echocardiogram. Did those this past Thursday. Have appt in couple of weeks to get results. Have not seen Rheumatologist due to a miscommunication between Pcp and Rheumatologist. So plan on trying to call for an appt next week. I have an appt for the Hematologist Oncologist in 2 weeks. My question is has anyone else on here had joint pain after being put in Hydroyurea? And if so what did you do about it?

[hunter5582]

Joint pain is one of the possible HU adverse effects. The fact that the pain resolved after stopping the HU supports this being an adverse effect. While it is worth following up with the rheumatologist, there may be nothing left to find. Worth doing though as the absence of a finding is a finding. It would have been appropriate to check uric acid levels too but again if that was an issue it has likely passed if the HU was the cause.

Once you have ruled out other causes, it is reasonable to deduce that you are HU-intolerant. This would mean the you could choose between Jakafi and Besremi as cytoreductive options. Suggest that you learn more about these options to support making an informed decision.

Wishing you success moving forward.