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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (745)Comment receiving replies
Replies to "@loribmt Hi Lori, Thanks for following up with the link above! Yes, my rash has improved..."
@liztaq Fred Hutch Cancer in Seattle said if your Jak 2 and need platelets lowered the recommend Jakafi, and when i told them how active i was and how allergic and how my system over reacts to most all medications, They still said it would be the best for me.. My Puyallup doctor have me on HU.. but i have had a lot of side effects from it.. So i think any thing you put in your body that isn't suppose to be there causes a problems and we are each very different with that experience.. So i don't know which is better, i guess one just has to try.. I don't like HU but Jakifi if you have ever had blood clots, can be a negitive for you, but we all have to weight the risk vs reward.. We really need a lot of data on these drugs..Hope you can find that happy medium, and feel some better..
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Hi @liztaq. This will be a good conversation to have with your hematologist about whether to continue with the hydroxyurea (HU) or switch to another treatment. The good news is the rash disappeared with being off the Hydra for a few weeks. A telling experiment would be to start the medication again to see if the rash returns.
Since you’re new to the forum I’d like to help you meet some of the other members who also have ET. We have a pretty lively group who have shared their experiences over the years with various medications such as Hydroxyurea (HU, Jakafi, Anagrelide and recently Besremi has been added to the lineup.
I did a quick search for links to get you started. Here are the results for the search for Jakafi and ET. Read through the list and don’t hesitate to jump into any conversation!
https://connect.mayoclinic.org/search/
During the time you were taking HU did you see improvements in your platelet levels?