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@ttown

I am 77 and was recently diagnosed with JAK2 ET in September of this year and have had the red feet and ankles. I also have red splotches (for lack of a better word) on the back of my left leg. These are not painful - just unsightly. I have a small level of numbness in both feet and in my left leg. These things are recent. My hematologist/oncologist prescribed hydroxyurea 500 mg daily. I had no side effects the first month. I had a bone marrow biopsy and it was confirmed, that indeed, it was the ET JAK2. My platelets went from around 600 to normal within 10 days of starting the hydroxyurea. I was thinking all was great......then the sores in and on my mouth appeared and my doctor took me off the meds for a 5 day period and I am to start taking the hydroxyurea every other day. It has taken a toll on me - It was difficult to eat and swallow. I still continue with the low dose aspirin which I was already taking when I was first diagnosed. Now I am terrified to go back on a full dose of the hydroxyurea for fear of the mouth sores. This is all so new to me. Has anyone else had problems with sores in their mouth?
Ginger

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Replies to "I am 77 and was recently diagnosed with JAK2 ET in September of this year and..."

You seem extremely responsive to Hydroxyurea (HU) if your platelets came down in only ten days.

As to mouth sores my literature suggests gargling and rinsing your mouth with warm salt water. A tip I read on another website was to rinse and swallow water before taking the HU capsule,

I am 78 and was diagnosed with ET JAK2 in June 2022. When I first saw the hematologist my platelets were 621 but jumped quickly to 735. She started me on HU 500 mg daily. I started with headaches every day. I was taken off it for a few weeks and now on 500 mg every other day. Headaches are much less. I also get very tired by evening and my scalp/hair/skin/eyes are drier. I see her in a couple days so will see how that goes,

Good luck with your journey. Eileen