Best results ever on Jakavi

Posted , 4 users are following.

Hello everyone,

Diagnosed december 2016, I have tried, venesections for a while, until my Platelets went way too high, then Hydroxyurea for 3 months (with major fatigue as a side effect) and I have been on Ruxolitinib (Jakavi) since november 2017. This med changed my life, since then, I regained the lost energy, lost 45 lbs (volontarily) and started getting in shape. Yesterday, I had my follow up with my specialist and was so pleased to see all my numbers in the normal range. Lately, my liver enzymes were really high, which could have been because of Jakavi, I was afraid to have to stop it, but my Dr suggested to stop the hormones I was taking for menopause, so I did. For the first time in years, my enzymes were normal, what a relief.

My niece, who is a pharmacist in oncology, told me that, since Jakavi is a new drug, we don't know the long term effects. She is right, but the short term well being is worth the risk.


1 like, 3 replies

3 Replies

  • Posted

    Hi marie-jos I also would like to try Jakafi but, here in the US the Medicare part D plans hardly cover the high cost of Jakafi. I have ET. Essential thrumbosethimia and after taking Hydroxyurea for 3 years I lost my food taste. I've been on Anagrelide for about six months. My platlets are in normal range witch is a good thing. Although i never regained my food taste completely, the food tastes a little better now. The good thing is, I have no side effects. Good luck to you.

  • Posted

    I'm so pleased you are feeling well, I have been on Hydroxyurea and clopidigrel for 8 years now with not many side effects.

    Its good to hear from someone on this other drug.

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