Hydroxycarbamide - the best time to take it

Hi everyone. It's strange - I use a computer for Emails, reports, letters etc. I text on the phone, but each time I put a post on here, I make a mistake and put it in a reply box. Well , I'll try again. My "reply" post was a bit long so I'll summarise. I am due to start Hydroxy, immediately after the holidays, to make sure that the docs will be around if I need them.

What I would like to know is whether I should take this drug before, with, or after food. I've read that it should be taken before or after food which seems to mean that you can take it any time. I have been prescribed Allopurinol and that definitely has to be taken with food or immediately afterwards, as I do with my Aspirin.

I know that drinking lots of water with Hydroxy is vital and some people take it in the evening if fatigue is a problem. Again, does a late evening dose need to be taken with food? As you can see, I'm a little confused. Please help. Thank you.

Sandra

17 Replies

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  • Hi Sandra - I have been on Hydrea for ten years and you will find it fine, bit of adjustment initially as with all medication and it is a bit of trial and error as to what's best for you. I always take mine first thing in the morning with lots of water and just after I have eaten breakfast - but certainly the guidance is it I can be taken with or without food it doesn't matter - I just find it helps not on an empty stomach. Lots as you say do take HU at night to help with fatigue but it's is preference and how you find it yourself so try both. HU does tend to make you spend a penny quite abit depending on how high your dose is so that factors in taking at night too. Just try a few options over your initial weeks and you will soon find a pattern good for you. And yes the most beneficial is lots of water, I have a little bottle with me all times and sip that often ! Lots of us have been on it long term and it's so beneficial and you will soon find the same. All the best.

  • Thank you so much for help at last. I needed that positive reply because I've been looking at the warnings etc. with my new packet of pills this morning. SCARY!

    Still, I have reached the grand old age of 70, and hope to have plenty of 'healthy' years to come if the pills do their job. Thank you again.

    Sandra

  • Glad to help - and remember the little piece of paper in medication packages are there to cover all vague possibilities of any medication to cover the company of any liability - while unfortunately scaring all patients about to take whatever treatment - I have worked in the legal world for years and so see if through those eyes i.e. companies ensuring they cannot ever be sued!! That's that value of this site talking to other patients who can give you more realistic feedback, as well as your consultant giving you realistic medical feedback. All the best.

  • Thanks again. My courage is increasing by the hour. I have just had my appointment letter to see my haemotologist again 2 weeks after I take my first dose which will be on 2 January. So I hope to know a lot more from experience by then.

    Have lovely Christmas and new year.

    Sandra

  • Hi i started Hydroxy in sept gradually upping my dosage ,havent had too many issues i take mine after food in case i felt sicky but been fine i sip water all through day and at night if i wake up ! which i do often all the besy Holly

  • Thanks for that, Holly. This site is so brilliant!

  • Hi Sandra yes it is , we get so much advice and info on here far more than the hospital Drs in fact it was my previous registra that gave me website for MPN voice sure your be fine and like others have said they have to put all reported side affects on the list to cover themselves i didnt look at list only went i got a symtom from treatment all the best Holly

  • Hello Sandra,I was diagnosed with P V at 70......now 76,been on Hydrea ever since,dose according to my monthly blood tests. It does require getting used to,I have mine at night,so I cope better with the day,,,,,,the fatigue still arrives,esp if I bash on and do too much,it's a question of coming to terms with the disease and Meds ,work around the tired times,rest when necessary,don't worry you will be fine, I still work ,am a sculptor ,have done three exhibitions in last few months,two in U K one in France,and of course the work for those expos. There is life with Hydre!Enjoy Festive season,don't worry!Best to you Sally

  • Thanks Sally.

    All this information and hearing about others' experiences has been really helpful and heartening. I wish you a very happy new year. Sandra

  • My husband takes it at 6pm he's been on it for a year now.

    Tracey

  • Thank you Tracey. Have a lovely Christmas.

    Sandra

  • Hi Sandra, I have been on Hydroxy since June this year and like you was very nervous about taking it and its potential side effects. I was advised to take it in the evening before bed then if any side affects could sleep through them. Up to now, touch wood, I have not experienced any. I do get bouts of tiredness and had my best sleep on the first night of taking them but back to normal sleep pattern now. Was told to take them same time every day. I take about 10 pm with large glass of water and sips of water during the night.

    Hope you are ok on your tablets.

    Regards

    Jane

  • Oh Jane, that's so helpful. Thank you.

    I am a bad sleeper usually, so if this thing knocks me out at nighttime, it will be a nice change for me. I'm gearing up for January 2nd and my 1st tablet. I'm seeing my haemotologist 2 weeks after that, so I feel I'm being well monitored. Despite this wretched MPN, I do feel fortunate compared with what others, with this, and other illnesses are going through.

    I suppose I tend to count my blessings at this time of the year.

    Thanks again.

    Sandra

  • Good luck with your appointment Sandra and taking the tabs, I hope you are free from any side affects.

    Happy new year

    Jane

  • Hello Sandra, I take mine at 6pm, regardless when I eat in the evening. It means when the 'hangover' hits I can sleep it off....Drinking plenty is wise, not only does it help with the 'hangover' it also helps with the tiredness.

    I don't really suffer as others seem to, I hope you don't either.

    Good luck & Merry Christmas x

  • I am 66 and was diagnosed with ET last year with platelets around the 1m mark. Started on 3 HU/day after breakfast. Now stable at about 250 and I am on 2/day and 1/day at weekends. So it will sort things out hopefully.

    I do get tired, but still do full time job and really haven't had many side effects.

    Good luck and have a great Christmas and New Year

  • Thanks for that Stephen. It's good to hear that a lot of people seem to have few side effects. I wish you and your family a very happy Christmas and new year.

    Sandra

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