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Hydroxyurea side effects

Posted , 4 users are following.

marie-jos6518
marie-jos6518

Hello all,

I have not been very active on the forum for the last month, being on vacation, but back to work tomorrow. By the way, I found a travel health insurance that will cover me as long as I am stable for 7 days prior to departure.  That made my vacation. I found it on the internet by searching "high risk travel insurance". 

During the last month I started hydroxyurea, first with 1 pill a day than 2 for a month. I had no side effectua. When I saw my hematologist for a follow up, platelets were down, but hematocrite and white blood cells continued upward. I am now on 3 pills a day, and have had a bad cold for the last  10 days, and had two episodes of cramps and diarrhea. Could all of this be side effects?  

What do you think? My dr said to stop if the effects are unbearable and it is getting there. 

Marie

0 likes, 18 replies

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  • PO32_6AP
    PO32_6AP marie-jos6518

    Posted

    Hi  find the amount of tablets u can tolerate I am

    Now taking 2 per day as that's what my body can put up with , with no side effects. I did go up to 17 a week but had to cut down , now my blood levels are all good I only eat red meat once a month and cut down on iron based vegetables and I've cut out alcohol so it all helps hope it helps you as well ! 

    • marie-jos6518
      marie-jos6518 PO32_6AP

      Posted

      Thank you for your reply. It seems that, as soon, as I take more than 2 a day, I feel awful, is it a coincidence? The problem is that, at 2/day, it does not bring my numbers down, they are still going up. My haematologist wanted to put me on Jakavi right away, but the insurance refused coverage. I am thinking that I'll go back and fight for it again.

    • PO32_6AP
      PO32_6AP marie-jos6518

      Posted

      Try 2 a day mine came down eventually I didn't say till after 6 months was up naughty me!

    • PO32_6AP
      PO32_6AP

      Posted

      We are all different ! I've had no side effects except getting exceptually hot , sometimes. 

  • peter98873
    peter98873 marie-jos6518

    Posted

    Hi Marie-Jos,

    You need to watch your input of Hydroxy as if it is taken in larger doses over a long period it could introduce you to some very uncomfortable symptoms.    After some 12 years of continuously taking this drug I suffered some quite severe side-effects, and eventually had to be taken off Hydroxy and prescribed Jakavi which I find is much more comfortable to use on a minimum dosage.  Initially I tolerated Hydroxy well but as the dosage was increased (21 a week) it proved too much and the Haematologist arranged for me to receive Ruxolitinib (Jakavi in UK).  Having taken this drug now for almost 3 years I feel decidedly better all round, whilst the haematologist stated that my blood tests had never been seen better for me.  So consider your Hydroxy dosage with as low a dose as you can avail yourself of.  Each patient has a personal level of Hydroxy. that they can tolerate so it is something for you to  consider. Discuss what you would like to do with your Haematoligist as they need accurate information on your treatment, particularly if Jakavi is being considered as a treatment.  I was never required to diet.  My immune system suffered too and on one occasion I was suddenly taken to hospital by the consultant for some urgent observation and treatment after I had felt really unwell.  When your immune system is unstable you can easily suffer  from colds etc. that seem to linger on.  Hope this will help.

    Peter.

    • marie-jos6518
      marie-jos6518 peter98873

      Posted

      Thank you for your reply. If I understand, you stoped after 12 years because the large dose of 3 pills/day was not well tolerated. Did you have the same kind of side effects that I have? Cold, digestive problems?
    • peter98873
      peter98873 marie-jos6518

      Posted

      I used to suffer all sorts of problems.  Colds that never seemed to go away, infections that needed constant treatment and would recur despite anti-biotic use.  Everything seemed to take forever to clear.  Certainly I felt cold night and day with digestive disturbances and some very unwelcome foot ulcers to which have only now just healed after 7 years of regular treatment.  The side-effects of Hydroxycarbamide are fully documented and described in more detail in the prescription advice included in each drug packet.  I was affected by other problems all of which were almost certainly from the prolonged usage of this drug which was accepted by the medics and a major reason for me to stop the usage and be prescribed Ruxolitinib instead.  I am quite aware that others do not suffer such extreme effects which seem to arise from a maximum dosage taken over a lengthy period.  The use of Ruxolitinib has been an absolute benefit with my blood levels at normal but I will need to continue this treatment as the symptoms could re-appear.  I would say that each patient should assess their own situation and stay tuned in with their Haematologist.
  • pannej
    pannej marie-jos6518

    Posted

    Hi

    I've been on this drug for  almost 6 years and no side effects, I don't think.

    It took a while to get the dose right.

    2 tablets 3 days a week and 1 4 days a week.

    If I feel a cold coming on I take manuka honey.

    I haven't had a cold fir a year now.

    Hope this helps.

    • peter98873
      peter98873 pannej

      Posted

      Hi Pannej,

      Good for you but if your immune system becomes damaged as is possible, then you will need to keep an eye on things.

      Peter.

  • pannej
    pannej marie-jos6518

    Posted

    In what way, Di I. Red to keep an eye on things ?

    Do you mean damaged because of my medication ?

    • pannej
      pannej

      Posted

      Sorry

      In what way do I need to keep an eye on things ?

    • peter98873
      peter98873 pannej

      Posted

      Your immune system which protects you from infections, ailments (colds etc) and other medical problems particularly those where you may become cross infected from other people needs to be efficient.  Medication and diseases can lower the protection of the immune system thereby allowing these ailments to gain access to the body,s system.   Your white blood cells are the main factor of this defence.  Nothing too complicated I guess.   Your blood tests should indicate aany problems in this respect.
    • pannej
      pannej peter98873

      Posted

      Yes of course !

      As I said no problems or dude effects yet 

      Thank you 

  • PO32_6AP
    PO32_6AP marie-jos6518

    Posted

    Hi you will probably find if u increase your dose slowly

    , not heard of just going straight in to 3 a day . I think take one a day fir a month then increase slowly as I did then 10 a week

    Fir another month then up to two a day.  On this forum u will find lots of people can tolerate 2 a day for years some have taken it fir 12 to 15  years I've only been on 2 a day for two to three years now, I to tried 3 it upset my body balances felt sick etc so now on two I get no side effects  listen to your body u will know when too much is too much go back to one I'm

    No Doctor but u have to manage yourself ! Hope this helps xx

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