Hydroxycarbamide - the best time to take it

[Splb3317]

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

[Helpatlast]

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.

[Splb3317 in reply to Helpatlast]

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

[Helpatlast in reply to Splb3317]

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.

[Splb3317 in reply to Helpatlast]

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

[JackLina in reply to Splb3317]

So lucky to have a consultant who will see you in 2 weeks. I've seen him once when he told me I should be taking Hydroxy and said I would have my next appointment in 6 weeks. He considered 4 for about 2 seconds. I feel so cheated because I feel I have just had a DIY fact finding mission. Told by one haem. that I have ET and JAK2 mutation and referred to another with a booklet and waited with nothing but panic to see the next one who cant even communicate effectively. 2 weeks in complete disarray wondering what will happen next and planning my vene. to be delivered an 8 minute session to be told what I was going to do rather than included in a discussion and considered an interested party. Have you spotted I'm feeling cheated and angry?

[Mardihel in reply to JackLina]

Oh your experience sounds hell. I was diagnosed with ET 4 weeks ago and positive JAK2 gene, and nearly cracked up, especially as a cancer nurse was there too. Been taking hydroxycarbamide and went back today had my blood test, platelet count down from 900 to 700 so was very pleased. But have to take forever apparently. Husband went with me and we asked a few questions, best of luck

[JackLina in reply to Mardihel]

I thought I didn't recognise this email. It was months ago. Just to bring you up to date. My experience with the hydroxy was s bad that I came off it and I am now on Pegasys. Today I learned my platelets are down to 249. how good is that? After 3 weeks they were down to 380, then 349, then 299 and now this. I've been on 45 mcg each week for about 12 weeks now. I cannot believe how effective this is. However, not without side effects. I know I'm taking it but at least there is the reward of decreasing platelet count. Now all I need to do is keep an eye on the red and white cells.

Hope your experience has improved and continues to do so.

All the best Penelope

[Kelly2 in reply to Splb3317]

Hi, do tell us how your treatment went!

[Hidden in reply to Helpatlast]

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

[Splb3317 in reply to Hidden]

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

[Hidden in reply to Hidden]

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

[Inca]

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

[Splb3317 in reply to Inca]

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

[tracey13]

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

Tracey

[Splb3317 in reply to tracey13]

Thank you Tracey. Have a lovely Christmas.

Sandra

[Jane-r]

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

[Splb3317 in reply to Jane-r]

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

[Jane-r in reply to Splb3317]

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

Happy new year

Jane

[Chelle_]

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

[Stephen399b]

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

[Splb3317 in reply to Stephen399b]

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

[Petsch]

I take mine in morning so I can drink tons of water all day. If I would take at night it would be impossible to drink all night hat water. I also take one at 6pm. That is on the days I have to take 2. Just diagnosed in January. Quite a shock being so healthy otherwise. Still getting used to my new normal but the pills have been working nicely. I also never read side effects too scarey. Good luck

[JackLina in reply to Petsch]

Hi Petsch. At last, someone as new to the diagnosis as myself. In fact, exactly the same, January. Although I'm aware I have had it for a number of years, just no-one spotted it. It took a lot of 'feeling as though I was badgering the doctors', who were wrongly diagnosing a number of problems I have been experiencing. Yes, I did have a very minor stroke in 2012. Almost negligible and thought it was another TIA. Seems I haven't been having TIAs but that's another story. Just completed my 10th day of Hydroxy and got so many side effects but anger seems to be overriding them all because I haven't been given a choice of prognosis.

Please keep in touch so we can compare the experience. All the best

[Petsch in reply to JackLina]

I’m doing well on drug. Finally the exhaustion that I felt has disappeared and my numbers are normal now on one per day hoping I can try less often. Just need to find a dr that will work with me allowing me to try that

I’m very stressed over this. Hope one day that will also end

[JackLina in reply to Petsch]

Hi Petsch

Thanks for getting back to me. You're so lucky to be without symptoms. If that's the case, please don't be stressed. All the posts on here seem so positive that I am becoming less stressed but still angry at feeling excluded on the decision. I'm on one and feeling cold in the day and hot at night. Sleeping is intermittent and haven't slept through since day 3. Bone pain is very severe as well as headache and feel as though someone has blown me up with a bicycle pump. Hand/knuckles painful and don't want to bend in the morning. Joints generally painful. Much more than usual when I could ignore them and work through it with exercise.

I'm hoping that these and the other symptoms will subside.

[Petsch]

Probably due to something else

Arthritis maybe

[Mardihel]

I take mine at night after food, because t makes me feel tired, I play tennis in the mornings so i need to feel ok. Only been taking for 4 weeks.