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Hydroxyurea - what is it for?

Posted , 6 users are following.

nandrews
nandrews

I have been taking this medication for many years, but would like to know, in simple terms, what it is for and how it works.

I was intially told that it was to reduce platlets, since I had recently before suffered a blood clot, which resulted in a liver transplant. I was later told that I have PRV and so I believe the medication is for that and it's effects and not just to control platlets.

I would appreciate any advice - thanks

Nigel

0 likes, 14 replies

14 Replies

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi nandrews. I take Hydroxyurea also. It is to keep the red blood count lower. Pv is when we have a high red and sometimes also high white blood count.This drug is also used for cancer patients. We do not have cancer. If not treated with meds, we could get cancer. We may still get cancer, but I am optimistic that that won't happen to me. If I had cancer, my blood would go very low. That's how I would know if I had it. The Hydroxy works well for me, been on it for 4 yrs. However, sometimes my blood goes too high, and The Haematologist increases the amount I take. If you type in the word, Hydroxyurea, it will come up on google. It explains what the drug does. Hope this helps.

    universes1 

  • peter98873
    peter98873 nandrews

    Posted

    Like you, I was prescribed Hydroxycarbamide (formerly h/urea) many years ago but in my case, only to treat PRV.  As far as I can recall there was no other drug available to  treat PRV  but it was initially used in the treatment of leukaemia, and still is.   I was aware that Hydroxycarbamide was of limited use with PRV but it was the "best available treatment' to me apart from the usual treatments eg venesection etc., which I have never had  Hydroxycarbamide was used to stabilise the blood of patients with PRV by controlling the various constituents that make up blood.  This was effected by altering the dosages as and when necessary.

    After many years I was required to stop using this drug as it was becoming less effective in treating my symptoms.  Fortunately, a new drug directed specifically to treat PRV was being researched in USA and UK.and I was put onto this research programme and ultimately, due to new circumstances that arose have now been successfully taking this drug, under supervision for almost a year.  The only and best alternative treatment available was hydroxycarbamide.  There was nothing else suitable.

    Like many drugs in use today they can effectively be used to ttreat different ailments, which also applies to h/carbamide.

    Hope this is of help.  I would expect your physician could give more exact details to satisfy your queries. 

  • nandrews
    nandrews

    Posted

    Thanks both for your replies.

    It gives me a better understanding.

    I believe, at least my haematologist tells me, that the meds are keeping things at the right levels. I have been on Hydroxycarbamide since 1993 with only a slight adjustment in dosage. So hopefully that will continue for a good while.

    Nigel

  • harrishill1
    harrishill1 nandrews

    Posted

    Hi again, nandrews. I commented on Hydroxyurea, and forgot to mention that it does also thin the blood, which prevents blood clots. It also keeps the blood count at the right levels. it also lowers the immune system a little.

    universes1

    • justin23294
      justin23294 harrishill1

      Posted

      Hi harrishill1

      ?About a year ago i had a blood clot in my lungs. fter 4 days in the hospital my platlets were 380 to 387.I was put on xarelto. after a  month  i could not walk. my legg muscles and ligaments hurt so much that i could only walk for few minutes. My family dr. recommended to see a orthopidic. some X rays and a dvt test showed normal. A few months later my platlets went up to 690. 3 more months went by and i asked my himotholegist to change my blood thinner med from xarelto to Eliquis.After a few weeks my leg pain was gone.  But he  wanted to do a bone marrow test.The test came positive for essential thrumbosiminia ET) and JAK2. I have been on Hydroxyurea for the last 4 months.Started one a day, then 2 every 4 days, then 2 everyday.Finally in the last month my platlets came down to normal range 340. What I have noteced is that in the morning whe I blow my nose I see some blood . So, as you said Hydroxyurea is also a blood thinner.After my next blood test I have to talk to my dr. Mayby I can lower my Hydroxyurea dosage. I'm still on Eliquis 2.5mg twice aday and 81mg of aspirin. I've done a lot of rechearch on my situation and there is no cure.  I have to take this medication for the rest of my life.I should not be complaining muh. I'm 80 years old.

    • harrishill1
      harrishill1 justin23294

      Posted

      Hi justin. You seem to have it all together though. I am going to do the same thing when I see my Hematologist in a couple of weeks. I am on two Hydroxyurea a day, and my leg muscles are hurting when I walk. I have walked all my life, so this shouldn't be happening. I think I will try and get the hematologist to let me go back to one capsule a day. I hope we both get what we want. I would hate to have to stop going for my walks. The dogs would hate it too, since they go with me. Let me know if your hematologist agrees to let you go back to one a day.

      harrishill

       

    • peter98873
      peter98873 harrishill1

      Posted

      Hello harrishill 1.   Good to see you are stil in touch.  From my own experience I can say that most consultants would be reluctant to reduce your dosage unless a real case can be made for it.  Most are aware of the side effects encountered and are able to do something for you about them.   They also know what the alternatives can be. I must say that I never had problems taking smaller doses of Hydroxy.  1 0r 2 capsules a day did not provoke any difficulties.  The problem is caused when the illness does not respond to the treatment.  I am quite sure you are well au fait with PVR and you have always had a clear perception of this disorder, but do consider carefully what a reduction might impose on your blood calculations and how this might affect you.  Just a thought.

      Happy Christmas and succesful 2017 to you.

      Peter.

    • justin23294
      justin23294 harrishill1

      Posted

      Hi harrishil. To folow  up. I talked to my hematolagist last week a few days after my blood test.I was very concerned because my platlest went up a bit  from 340  to 470. My hematolagist said that it's not uncommon  for the platlets to go up and down when on Hdroxyurea. He wants me to continue to take 2 pills a day  and  go for blood tests once a month.  To clearify.My legg pain was caused by the xarelto. When i switched to Eliquis, the pain went away. I still have some pain, but nothing to compare to when I was taking that no good drug Xarelto. I now take 2.5 mg of Eliquis,twice a day, 81 mg of aspirin once a day and 500mg Hydroxyurea twice a day. I'll keep you posted.

      ?Justin. Happy new Year!  

  • nandrews
    nandrews

    Posted

    Thanks for that.

    As Peter said single drugs can do different things, but as you say also they can overlap doing similar. I take warfarin, probably to ward against another clot (and I have had it impressed on me never to miss a dose). Aswell, I take an immunosuppresion med to guard against rejection. But as you say Hydrea also covers both those bases. So clearly it is a difficult balancing job intially to get each med controlling the various conditions in harmony.

    Nigel

  • richard96620
    richard96620 nandrews

    Posted

    I took Hydroxyurea to improve my PV, according to my oncologist, this drug will help reduce platelet count and red blood cell count. As you are also aware, It is not the same for  every one.  this drug does not work for every one, .....Richard Law

     

    • peter98873
      peter98873 richard96620

      Posted

      Hi Richard.  You should bear in mind that when you are prescribed Hydroxycarbamide (Urea) that the consultant takes into account many factors affecting your personal tests.  This includes height, weight, existing medication etc.  There are others but these are less obvious.  The dosage you receive is calculated on these factors and the effect on your future well-being.  It is often difficult to come to terms with the side effects that drugs can reveal but one needs to weigh up the advantages against the disadvantages.  Hydroxycarbamide is generally prescribed where patients have had most other treatments or where these have been excluded.  Ask yourself this question;  What is available to me if I don't use Hydroxycarbamide?  The answer is virtually nil.  So far there is little more than perhaps one or two new drugs that may become generally available once the tests have been ended.  Hydroxy can be versatile where properly controlled but as I have previously said, it needs careful attention and use and the best person for this is your Haematologist.  I have been through this myself and took the drug over many years before I needed to change.  I have read in an article subscribed by a contributor to this site that there is some opinion that Hydroxy should not be prescribed for more than 3 year terms.  This is recent information from US where a great deal of the current research is being conducted.  I cannot confirm this myself but I suspect your specialist may have seen the article.  I doubt anyone can suffer the side effects any more than I did.  I would not wish anyone else to go through the same process.  I relied on my Haematologist and was able to pull through.

      Have a pleasant Christmas and I hoipe you can settle your problems soon.

    • richard96620
      richard96620 peter98873

      Posted

      Hi Peter,

      I am a new patient to this PV, is learning from the community.

      Thank you for your feedback.

      For now, I am taking one hydrea in the morning and one in the evening, I do not experienced any side effect of this drug.

      In Feb 2017, I will have my full blood count check by my oncologist. hope the drug works for me.....Richard

       

    • marie-jos6518
      marie-jos6518 peter98873

      Posted

      Hello everyone, I'm new to this forum since I have even diagnosed only 3 weeks ago with pb. Here in Canada and in some countries, Jakafi has been approved as an alternative to Hydrea. I've been told by my Hæmatologist that he didn't want to put me on Hydrea because I am too young (51) and, in the long term, it could provoke leukemia. For now, I only take Aspirin and do weekly phlebotomies but he would prefer to put me on Jakafi.

    • peter98873
      peter98873 marie-jos6518

      Posted

      Hello Marie-jos.  Doubless you will learn much if you keep in touch with this site.  I have been using Ruxolitinib (Jakavi) for about two years now and I find it much easier to get on with than Hydroxy.  It is more designed for the job.  You would do well to listen to your Haematologist as they have more hands-on experience than other medics acquire of PV.  It is a big learning curve for you but always ask questions of your doctors if you have any uncertainty or need answers  You probably know by now that PV is long-term and will need constant medical checks.  Best of luck to you.  You will discover plenty of advice on this forum from those who too suffer as you do. Also there are web-sites for you to refer to that can be very useful.. Sorry you have been diagnosed with thisi disorder but it is treatable.  Cures seem to lie with stem-cell treatment, but this must be some way off yet.  Good wishes for 2017.
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