Anyone have ankle and leg swelling on Hydroxyurea? - MPN Voice

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Anyone have ankle and leg swelling on Hydroxyurea?

dogsandhorses profile image
5 Replies

I've started having ankle and lower leg swelling, and some numbness in my lower legs. I have ET, and am JAK2 positive. I've been on Hydroxyurea since 2018. I was wondering if anyone else has experienced that, and what did you do about it?

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dogsandhorses profile image
dogsandhorses
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hunter5582 profile image
hunter5582

These are issues that require prompt attention from your MPN care team. What you are describing could be edema and/or peripheral neuropathy. Edema and peripheral neuropathy are both potential significant adverse effects from hydroxyurea. That is not to say that this is what you are experiencing but this is a situation where it would be prudent to not take chances. Suggest getting seen ASAP.

Please do let us know how you get on.

dogsandhorses profile image
dogsandhorses in reply to hunter5582

Thank you Hunter. I've still just got a hematologist/oncologist. I have an appointment with her tomorrow. Finally getting to see an MPN specialist near Kansas City soon. Was waiting until I got my cataract surgery done. Sounds like I need to rethink that. Maybe the local Dr. will know what I should do until I get to the specialist. I'll let you know.

hunter5582 profile image
hunter5582 in reply to dogsandhorses

Hopefully the current doc is familiar with HU adverse effects and can make the distinction. I would be sure to get to the MPn Specialist ASAP.

Meatloaf9 profile image
Meatloaf9

Hi, I had foot swelling when I started taking Amlodipine for blood pressure. Just wondering if you have started any new medications or supplements that could have caused the swelling. Mine went away after a week or ten days. I have been on HU since 2021. Best to you.

dogsandhorses profile image
dogsandhorses in reply to Meatloaf9

No, nothing new. Everything has been the same for a long while. Thanks for replying.

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