Et

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Good evening, I was diagnosed with ET 3 years ago and since then just been taking a asprin a day but my platelet level has risen every month and now my hematologist wants me to start doing weekly injections. Is anyone else taking these and what should I expect?

  • Hi there.

    im ET JAK2+ve & was on aspirin for 9 years. Last February my platelets were over 800 (never been more than mid 500s) so I had to start injections. 
    Pegasys was not available so I had Besremi (like an EpiPen) 100mcg fortnightly. My platelets went down to 550 after 3 months, then by 6 months they were around 330 (not been that low since diagnosis in 2016!). 
    In December I was switched back to Pegasys 90mcg weekly but discovered it was a proper needle and freaked out as im a needle phobic I had to go to the hospital for the nurse to show me how to use it. It wasn’t too bad & after my 3rd injection I had mastered it as it’s only a small needle. 

    I did have side effects from it (insomnia & fatigue were the worst but I was also recovering from ENT surgery), so after speaking to my consultant the dosage was reduce to 45mcg weekly. The side effects have been minimal now and I’m maintaining low numbers now which is great.

    i would say consider it as mine brought my platelets down significantly. 
    Hope this helps. 

    M