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harrishill

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harrishill1
harrishill1

Hi njp2020. I noticed you mention maybe doing only phlebotomies. I read online that it isn't good to have too many phlebotomies. It can make your condition worse. My Haematologist only does them if absolutely necessary.

We have to listen to the Haematologist. He is a specialist and knows what he is doing. I've been on Hydroxyurea for 4 yrs now, and am doing great. If for some weird reason you get side effects, your Haematologist would then consider one of the other drugs. I think none of us ask enough questions of the Haematologist. We do research online, when we could easily ask him instead.Good luck, and best wishes.

harrishill

      

0 likes, 6 replies

6 Replies

  • paul250360
    paul250360 harrishill1

    Posted

    I'd be interested to know how many phlebotomies would be considered too many.. I average 4 maybe 5 per year and have not deviated for 25 years. add an aspro a day and that is my treatment regime. I see my haematologist annually and have a full blood test before I see him.
  • harrishill1
    harrishill1

    Posted

    Hi, someone mentioned how many phlebs a year is too much? What I read is that to just have phlebotomies and no meds, is not good  if it is for a long time. 4 or 5  per yr does not sound like too much to me. As long as you follow your Haematologist's advice, you are in good hands.

    harrishill

  • geoff-mpnfamily
    geoff-mpnfamily harrishill1

    Posted

    I find that statement a bit odd about the venesections... in the first year I had approximately 40 venesections, about 25 in the second year, gradually I had one every 4 weeks, now I average one every 6-8 weeks. I've been doing this for 7 years now, and have done me no harm.

    The only reason harm can be done is if you are venected when your HCT (Haematocrit ) falls below your target - usually .45 and in some places .42 for woman. Or if your ferritin is too too low eg bellow 15 (bottom range is usually 25 - but it does depend on the machines used to measure your counts)

    In cases like this your haematologist may want to put you on a short dose of ferrous sulphate or an infusion. But should never be self treated, as this will drive your red blood cells up.

    Not everyone need to be on chemotherapy such as hydroxyurea /hydroxycarbamide. This is only required if your platelets are too high as well.

    I only have venesections, mini asprin & Lansoprozole.

    • andrew45678
      andrew45678 geoff-mpnfamily

      Posted

      I'm interested in your statement that ferritin should be above 15.  Mine is usually below that and my haemotologist so far thinks that it's OK.  Can you tell me where I could find more information about the suggested minimum ferritin level.  Thanks
    • geoff-mpnfamily
      geoff-mpnfamily andrew45678

      Posted

      Unfortunately I have no information to verify this, except that's what my haematologist said. All I know is we are to be kept iron deficient but not to a point of being seriously syptomatic... a key word to use if your feeling too rough. We are all different in how we tolerate iron deficiency.

      I do know being too deficient can be harmful, it causes me muscle pains, chest pains breathlessness bone pain and more... if you are experiencing any of these speak to your haematologist. They may want to put you on a short dose... please don't do this yourself as close monitoring is equipped.

  • peter98873
    peter98873 harrishill1

    Posted

    If you just type "Ferritin blood tests" into Google search you will find a heap of information on your question, mostly from professionals.  Too high a level or too low indicates that something needs attention.  Female readings are lower than male.  Seems like the readings you give are close to the norm. Have a look at the various options available and you should have your question answered.  Good luck.
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