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Having to take 2 hydrox tablets per day

Posted , 4 users are following.

PO32_6AP
PO32_6AP

Hi I've been diagnosed for 3 years and gradually have been asked to more tablets now 11 a week, as my heamatoctric is still high. Any one out there take more than that over longer period.

I am very lucky I do not have any side effects but levels still high. Brenda

0 likes, 9 replies

9 Replies

  • peter98873
    peter98873 PO32_6AP

    Posted

    I took Hydroxycarbamide for many years without any problems but my red blood cell count became far too high and I needed to come off a couple of times, replacing the Hydroxy with large one-off doses of Busulphan.  This worked, but once back on Hydroxy the count went up again before I was taken off and given Ruxolitinib on research.  The big problem with hydroxy is taking anything nearing the maximum dose of three capsules per day.  I suffered some quite severe problems which caused  concern to the medics.  Two daily doses did not noticeably affect me  but I suggest you keep an eye on things if you approach the maximum dosage.  Hydroxy is a cancer designed drug that operates well on lower doses  with PV.  Until recently it was the best available treatment for this disorder.  So far, the Ruxolitinib has been quite effective for me but I am not sure if it is generally available on prescription.
    • PO32_6AP
      PO32_6AP peter98873

      Posted

      Thankyou for your detailed reply it's really good to have this opportunity to discuss symptoms . Thanks
  • nandrews
    nandrews PO32_6AP

    Posted

    I have been on 1gm per day for many years and in the last five I have been asked to take 1.5 on 2 of the days each week.

    ​So not much change there.

    ​I am not really aware of any side effects from the meds. But maybe I have just got used to them.

    ​Nigel 

    • PO32_6AP
      PO32_6AP nandrews

      Posted

      Thankyou for your reply, I am aware it's a toxic drug, and did not want to take it for a year or so but was persuaded by the consultant to do so. What is a top dose? My heamatoctric is quite low 494 I don't see why I should take it ... What are the benefits thanks again
    • nandrews
      nandrews PO32_6AP

      Posted

      I don't exactly know how it works.

      ​Initially I was told that it was controlling platelets.

      ​But I believe the PRV causes the bone marrow to produce too much blood generally and so the Hydroxyurea is to reduce that effect.

  • clem19079
    clem19079 PO32_6AP

    Posted

    Why do they not take blood of until your count comes down to normal. I take nine per wk and if my blood count rises slightly I have a pint off. Rather that than than take as many hydrea as your taking. Best wishes
    • PO32_6AP
      PO32_6AP clem19079

      Posted

      Thankyou for that, I believe they said it's not good to have too many blood lettings as it makes the blood cells small and immature . Therefore making the person fatigued. However I do have one about every 5/6 months.
  • clem19079
    clem19079 PO32_6AP

    Posted

    My blood count went through the ceiling a few yrs ago. My consultant was going to increase my med. I asked her to take a pint off every 8 to 2 days 5o see if things would normalise, I was right and it worked. I was told the other day that American's feel that because uk health service is free that it's inferior, take from me it is the best in the world. So it would be wise to question your treatment whenever your feeling apprehensive about how you are being looked after. I really do feel if your consultant wants to put you on a higher amount of hydrea , then I would have a problem with that. I am not saying your treatment isn't good , but hydrea ia is a chemo drug. Hope this helps you.
    • PO32_6AP
      PO32_6AP clem19079

      Posted

      Yes I hear what u say, I looked and my tablets are 500mg ea so taking 2 a day is usual the dose . I really do not want to increase my dose . My consultant says too many blood lettings would make you very weak?
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