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Anyone living with Essential Thrombocythemia with JAK2?

Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (104)
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@critterlover

I began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was taking the Hydrea before bed but because I don’t eat before sleep it bothered my stomach. Now I take it at 9:00 am after having a little something for breakfast. This helped.

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Replies to "I began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was..."
Lori, Volunteer Mentor | @loribmt | Dec 26, 2024

Welcome to Connect, @critterlover. What a lovely @name! We’re friends already. ☺️
Hydrea can occasionally have effects such as hair loss and mouth sores. Sometimes, from what other members have said, having a dosage change may help alleviate some of the symptoms. You’re early in your Hydrea treatment so this may take a little time to balance out.

Thank you for sharing your experience with what has worked for you to avoid tummy issues.
If you haven’t seen this discussion already, here is a link to some good conversations about:
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms which led to your discovery of ET?

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didyolsn | @didyolsn | Dec 26, 2024

I started HU in February and my hair soon started falling out in handfuls when I combed it. In July I started taking amino acids for something else, but soon noticed that my hair was no longer falling out, and it was growing back in. Still growing in nice and thick. I’m taking Essential Amino Acids, brand is Double Wood. Maybe it’ll work for you.

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