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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@loribmt

Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who are taking Hydroxyurea (HU) for their PV or ET. Some have side effects and have found a benefit from asking for a reduction in the dosage. After talking with their doctors they’ve been able to drop to 500mg daily or sometimes 1000mg every other day, etc. So it may be helpful to see if that is an option for you.
As we get older our bodies no longer metabolize medications like we did when we were younger. Drugs can linger in our body longer and have the potential to cause side effects.

Hydroxyurea is one of many drugs which can cause photosensitivity reactions. The skin can become easily irritated, inflamed, and more prone to burning.

I found some ongoing discussions for you with other members taking HU:

How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…

https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
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This discussion with @dale1k @nypara66
@1995victoria @robert3861
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/

Have you spoken with your doctor about possibly reducing your dosage to see if that makes a difference in your skin symptoms?

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Replies to "Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who..."

Correction: I have PV NOT ET, but I am taking the hydroxyurea. The dosage was adjusted to just 3X a week now and for 12 weeks my platelets are stable. I’ve gotten phlebotomies every 8 weeks for the last three times. I’m hoping I can stay at this dosage. My skin spots have slowed down and gum sensitivity also. Good luck!

Hi, I have been on hydroxyurea since 2014. I cant say I have had any side effects from it. They increased my dosage earlier this year. I now take 500mg every day and 1000 on Mondays and Thursdays. My platelets had started going back up...
Still no side effects. They first put me on Anagrelide that didn't work at all. I got a terrible headache from it.
Thank you for bringing me back into the conversation

Helen