1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Hydroxyurea, how has it affected you?

Posted , 4 users are following.

Orseblue
Orseblue

At the end of this month I will start Hydroxyurea, it say that one of the side effects is thinning of hair.

My hair falls out for nothing so I am sure it may be the case for me and that is ok.

Can you please share your experiance with this medication?

Have you been able to continue working a fulltime job, feeling fatigued, anything that you do that makes you feel sick?

I understand everyone are diffrent, and yes I read the documented stuff,

But would like to hear from your own experiance.

Another thing, in the last week I been getting "restless leg symptoms, RLS" so bad its impossible to sleep.

Use to get it when pregnant but in a mild format, does anyone else get that?

0 likes, 19 replies

19 Replies

Next
  • nandrews
    nandrews Orseblue

    Posted

    I have been taking Hydroxyurea​ for many years and so it is difficult to know what to attribute to that and which might have other causes.

    ​I have had RLS at night but I was prescribed some sleeping tablets and since then the situation has cleared - even though I haven't continued routinely with the tablets.

    Yes I do get tired quite easily and have some bad days. Or just feel so sleepy only a matter of an hour or so of getting up in the morning!

    ​But I 'roll with the punches' and at least it doesn't seem to get any worse.

    ​Nigel

    • Orseblue
      Orseblue nandrews

      Posted

      I never taken sleeping pills, do you wake up feeling ok?

      If thats my solution I be on it.

      Thank you Nigel

      regatds / Anna

  • Scotslassie
    Scotslassie Orseblue

    Posted

    RLS. I also suffer cery badly with this and around about 4 pm every day it starts getting very painful.  I wake up several times at night and never get a full nights sleep without pain. My haematologist said that it has nothing to do with hydroxea and I have just started taking a new pill called Antistax leg health supplement, hopefully this will help with the pain.
    • Orseblue
      Orseblue Scotslassie

      Posted

      Thank you so much, I'll see if we have that here in Australia.

      The leg stockings are uncomfortable, seem to work but not sure for how long.

  • Orseblue
    Orseblue

    Posted

    Thank you so much for your responses.

    As a trial i put on the pressure stockings and it seem to do something.

    • Scotslassie
      Scotslassie Orseblue

      Posted

      I have been doing the same smile before that I was wearing crepe bandages whenever I was at home until my husband reminded me that we had the stockings.
    • Orseblue
      Orseblue Scotslassie

      Posted

      Hello, I'm in Queensland, might try the long pressure stockings, I only have the knee high ones.

      It gets worse at night, seem to spend so much time walking up and down the hallway.

      Took 2 panadol's and actully went to sleep after but it was then 2am so could have been that I was that tired.

    • Scotslassie
      Scotslassie Orseblue

      Posted

      Same here. I take epsom salt baths..I buy it in sacks from ebay and use 4 cupfuls. Sometiimes I have to have a bath in the middle of the night.

      Painkillers dont seem to do anything so I dont even bother taking them anymore.

      Last night the pain wasnt as bad as usual, so hopefully the antistax are starting to kick in.

      You have to keep taking them every day.

       

    • nandrews
      nandrews Scotslassie

      Posted

      As a cautionary suggestion

      ​Is it worth first getting a medical opinion on using leg bandages?

      ​After all we worry about DVT when flying and that is due to poor circulation in the legs. If you are putting a restricting bandage around the whole leg, is this not going to create a similar situation?

      ​I don't want to be alarmist but you have to look at the whole picture.

    • Scotslassie
      Scotslassie nandrews

      Posted

      I only apply it to the area that is the most painful...usually the front of the shin area mid calf.
    • Orseblue
      Orseblue nandrews

      Posted

      I am waiting to see my hematologist on 29th, in the mean time trying to find a way to get some sleep.

      Not overly concerned about the pressure stockings as I just had major surgery and they forced me to wear them all the time.

      Especially while sleeping.

      I fully agree with always check with medical opinions, and even before taking any herbal / vitamin tablets I would consult with the doctor.

    • Scotslassie
      Scotslassie Orseblue

      Posted

      I have just checked with he haemotologist and he says that it is ok ....no iron in anti stax

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.