Should I ask?

Hi my MPN family, hope you all had a lovely Christmas.

I was diagnosed with PV Jak2+ in January 2015 and immediately put on 1000mg of Hydroxy and given 2 Veno-sections. So far my blood results have gone back to almost normal. I am due for my 8 week checkup soon and I am wondering whether to ask for a short trial using half the hydroxy amount to see how my body reacts. I am only considering asking this because I was put straight on a 1000mg, not starting on a lower dose to see what happens. It would be wonderful to reduce the amount of toxins I am putting in my body. I am just nervous about rocking the boat when my results are so good. Any advice would be gratefully received as I do value the suggestions from everybody xx

9 Replies

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  • Hi Jillydabrat,

    I started hydroxy 3 years ago after 8 years of just venesections. I started on 500 mg every day, after a few months my platelets reduced and my dose was reduced to 500 mg Monday to Saturday, day off Sunday. My platelets gradually started increasing so I am now back to every day again. I think it's worth a try reducing if you can. Maybe you could try 1000 Monday to Friday and just 500 Saturday and Sunday? And see what happens. I know plenty of people here take a different doses some days. I agree that the less toxins we put in our body the better, but if there is no option but to take it we may as well take the dose that best suits.

    Good luck with whatever you decide.

    Judy x

  • Definitely worth asking the question. . It's clearly going to be on your mind so get in there and find out what scope there is for a dose reduction or partial one as Judy suggests. At least if it isn't reduced as of yet you will hopefully know why. , Cheers Chris x

  • When I was on hydroxy I took more Monday to Friday and less on weekends, you could suggest that and see how you go on, and ask for a review after 3 - 4 weeks of doing that.

    I'm now on Anagrelide but the dose keeps altering as my platelets have been up and down on it. XX

  • Thanks guys, you have been more than helpful. I think I will ask if my haemo will consider a reduction, there can't be any harm in asking. Cheers everyone xx

  • I think the dosage will normally be higher initially to get things under control. Then they should adjust/ reduce goal is min dosage that maintains those results. Diagnosed 14 mos ago, dose reduced to 500 MG after 4 mos and holding. Good luck!

  • I have the same condition, diagnosed in 2014. I have been managed via venasection up until now. My blood results lately have not been so good and more venasections required. Was wondering what could be next?

  • Hi Fazzer, your consultant may put you on Hydroxycarbamide to help with your blood results. I don't find being on this a problem, besides a little wait gain and extra care needed with my teeth, I actually think it's a miracle drug for how it's helped me but I would like to see if a lower dose would keep up the good work. Happy New year xx

  • Thanks for the reply, Happy new year to you too!

  • HI my husband has been on hydroxy for a year now he's on 500mg 7 days a week. His platelets have come down but all his other bloods are still out of range. His hct keeps creeping up to 0.51 every 3 months he has a venesection. He was having venesections monthly so it's reduced these down taking hydroxy.

    He's only 45 years old his consultant didn't want him on a high doseage because of his age I'm sure at some point he may need to up his doseage.

    Tracey

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