Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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I have a question: can GLP-1’s help with platelet reduction, or help with ET symptoms in any other way? Anyone have experience with this?

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I am happy to say my platelets are 400, with highest 565 a few years ago. ETJAK2 since 2023, currently HU 500mg Mon-Fri. My spine is badly "stenonis-afide" and I am sure that is the reason for my numb feet. My hemo says that people on my "low" dose of HU usually do not have any side effects (propaganda perhaps). Since I am 79, I think it is impossible to say what is causing what. I am sure ageing, and banging my body around, in sports and adventures as a young person have not helped.

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Hello~
I have a question for everyone- I have ETJak2 and on 500mg of Hydroxyurea daily. Platelets are in line after 6 months. At times when I seem to be coming down with some other virus like a cold or flu that circulates, it seems my symptoms from either the ET or the Hydroxy flare up as well. Dizziness, shortness of breath, ears ringing, fatigue... along with the cold symptoms of congestion, sore throat etc... Is this normal? Does anyone else have experience with this?

Also, second question, once platelets are in line and otherwise healthy, do side effects still occur from the ETJak2/Hydroxy? Symptoms of the dizziness, shortness of breath, fatigue, etc....

Thank you!

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I have also had to take more than 1,000 mg daily in the past when I was getting steroind injections for my hips and back pain. It has been about 8 months that I have been stable on 1,000 mg daily of the Hydrea.
I had three days a week with 1,500 mg on those days and 1,000 the other days. That was enough increase to get the platelets back in the safe zone. I have also suffered from anemia because it affects the red and white cells also but I am doing better because the doctor prescribed some iron tablets which I take every other day and have changed my diet to include a lot of iron. My iron levels are much better.

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