hello everyone
I have ET JAK2 positive and take Hydroxycarbamide. I take this in the evening. My haematologist nurse has informed me this should be taken in the morning. What time of day do you take your. I understood that the evening is better so any affects are while you sleep.
Your advice and experiences would be appreciated.
Thanks Yvonne
hi I take mine in morning after breakfast
Thank you. Do you get any side effects
in the beginning I got lots nausea so I ate ginger biscuits or drank ginger ale but very rarely now been on it 17 months now. And other thing my skin has really aged on arms
I take mine in the afternoon ,no problems
thanks for your reply
I take mine after my evening meal. I have never heard a specific time being advised other than taking before bed to avoid experiencing symptoms. Did your CNS elaborate on her comment?
Hello
Thanks for your reply. I mentioned during a consultation that I took it in the evening. The nurse just said that’s a strange time to take it and usually mornings are when this medication is taken. She didn’t say I had to take it in the morning but her response made me interesting in when others took theirs
Yvonne
Morning I have ET started taking Hydroxy carbamide a year ago .I was taking in the morning but had some issues , while speaking to Professor Harrison at Guys she suggested always taking at night which I think has helped . L
I think as long as you take at similar time which ever suits you is ok
There is no particular time of day recommended in the dosing instructions for HU. It is a matter of personal preference.
drugs.com/monograph/hydroxy...
epocrates.com/online/drugs/...
Thanks Hunter -professional as always!
thanks for your reply 😊
Advised from the start to take it at bedtime to avoid any possible side-effects. Did that for twelve years without any problems until last year when the HU began to cease working. We're all different though of course and you'll discover what's best for you 
What did they switch you to? Or just increase dose?
I finished on 2x500mgs four days and 3x500 three days then moved on to Rux.
I was told to take whenever I wanted but that I should drink it with a big glass of water. She said that taking it last thing at night with water might mean you’d wake up needing the toilet which would disturb your sleep so perhaps evening meal time better?
I take mine with breakfast but only because I find it easier to remember. Evenings for me can be a bit disruptive if eating out, work etc.
I’ve been taking it for 11 years and no issues.
Hi. . . I take mine before my evening meal. I've been on it for 2 yrs. without any issues.
I take 2 tablets a day: one at 9am and one at 9pm to maintain a level load. As suggested by my haemo team. It works for me with no side effectsJohn
Hi Yvonne,
I take mine after dinner. My hematologist recommended it to able to sleep tgrough any side effects. It works for me.
I feel tired during the day, but it is nothing compared to how I feel if I wake up at night. If I wake up at night, I feel rough.
Take care.
Mary
I take mine last thing at night.
Me too!
I take mine with my evening meal because I started on aspirin at the same time. I considered changing the time I was taking it and discussed this with my consultant who said it didn’t matter when you took hydroxy, so long as you were consistent.
Perhaps the nurse was commenting on typical habits?
I take mine in the evenings before bed with small glass milk.. stopped any nausea that was happening . Been on it 7 months now… feeling pretty good but a have noticed the recent weight gain and bloating now more the issue.
I’ve never been told when to take it. Usually in the morning but sometimes I forget so it’s whenever I remember. No side effects & that’s been 4 years.
Hi Yvonne, yes that’s when I take mine for same reason. Did have to take some anti nausea pills for a couple of days early doors but not needed now.
I take it in evening
Hi, I used to take mine in morning but it makes me v tired about 40 mins after taking so now I take 2 in afternoon and third one early eve. I always take after food and with big glass water per tablet, swallowing separately. I’ve been taking it for 15 yrs + it definitely makes a difference to me as to when I take it/how I feel. I don’t take at night because I take hrt when going to bed and I don’t want them to clash! Hope you find the best time for you- I honestly think it’s a personal choice. X
I take mine in the morning. I have been on it for 5 weeks now and I have noticed dark lines on my nails . I have PV and diagnosed in November last year so still in shock at having this have no energy and feel dizzy, unable to walk very far so haven’t been out the house much except for hospital appointment, climbing stairs is like I have just climbed a mountain, just this feeling of being unwell and just constantly hoping that tomorrow will be better but never is. Sorry about moaning as I know there are people out there worse off than me, but does this get any better with medication kicking in or has anyone had these symptoms as I don’t know anyone with this and would welcome any help , thanks for listening
I can relate to this - I have ET, diagnosed last May. I was on HU for four weeks. All was fine for three weeks, but in the fourth week the side-effects hit - peeling skin, abdominal pain and extreme fatigue, just as you describe. The haematologist suggested a four week break, and after that agreed I should not go back on it. It did bring my platelet count down, but the cost was too high. The side-effects subsided once I stopped the HU, but it took about eight weeks to recover from the fatigue. Mediterranean diet and walking also helped. It is very difficult to disentangle the effects of the disease and the treatment, as Hunter says. Maybe you could negotiate a break of a couple of weeks from the HU to see if it is causing the fatigue?
I was at the haematologist yesterday and she told me to pause HU for a fortnight and see how it goes. The symptoms I have are just the same, the only new things are the dark lines on my nails and the soreness under my ribs on the left side which she is getting me a scan for. Thank you for reaching out to me I really do appreciate it
hi I used to take in the evening so you can sleep off side affects
hello I take one in morning and one in evening
I take mine at night per doctor’s recommendation to keep nausea away but still get it once in awhile after 3 years!
Hi, I used to take mine at night with no problem but then I thought morning would be best so that I can drink plenty of fluid during the day and not be troubled with toilet trips during the night. I have not noticed any difference in how I feel....anything goes.
I asked my hematologist if time of day made any difference and he said it did not. I switched over to taking it at night because it was causing too much fatigue in the middle of the day. Taking it at night doesn't seem to help me sleep any better though. Pity that.
Hi Both -I have been on Hydroxy for 3 years now & take it after breakfast with a large galss of water.No problems with that, but do have periodic mouth ulcers, which I have less of if I rinse my mouth out after the tablet, or have it with yogurt... lots of luck xx
Hello YBSx
Like you I have ET JAK2. I’ve been on increasing amounts of Hydroxycarbamide for 9 years. Important for me is to take at least 1 pint of water with it. Normally I take it after breakfast but if I‘m traveling or have a busy day ahead, I wait until the evening. In my case the timing doesn’t seem to matter…
I hope you can find out soon what‘s best for you. Good Luck!
Hi, I have to take 3 a day so I do mine breakfast, lunch and dinner, I get no side effects, but perhaps because I take with my meal. I also try to drink (water unfortunately, no alcohol allowed) as is recommended.
I take it at night
I take 1000 mg in the morning always on an empty stomach. I have been fortunate that I have had no side effects. My hem said it is not time specific and could take whenever I wouldn’t forget. All of my counts were high and it has them all in normal range. Working fine for now.
Hello Yvonne,
I take mine at night. My hematologist states that is a good time to take it because of side effects.
I will be interested in other peoples experience.
Enjoy your day!
hello, like others take mine in the evening when I have my evening meal. I don’t think there is any specific time to take this,
Well I take it with lunch, no big deal.
Probably a good idea to take it about the same time every day.
Other than that i doubt it matters.
Have you experienced any side effects, most people don't.
Good luck.
Hi I take it just before bed with a bit of dry toast or biscuit. I found this lessened the chance of feeling nauseous as I am asleep. I also take blood pressure meds in morning and wanted a gap between the 2. Otherwise no side effects and it has proved efficient for lowering the platelets. Xxxx Val
Hi, I take mine in the eveningas the doctor said it was up tome. I would like to know what the reason would be for taking it in the morning? As long as you take the correct dose and not too close to each other it must be ok to do what you want.I used to take mine in the morning but gor terrible stomachproblems. As I now take it in the evening I am fine!
Hi Yvonne. I'm also ET Jak2 + 2 other mutations. I take my Hydrox in the morning, approx. 08.30 after breakfast. Apart from a little extra tiredness, I've had no other noticeable side effects. I've been taking it for about a year. Initially discussed when to take it with Haemo and Specialist Nurse and both agreed it didn't really matter providing it was regular. I'm also having a specialist blood test to determine if my Allelle Burden of my Jak2 has increased. If it has, I will probably have to change my medication from Hydrox to Interferon. Which means a different regime and poss sude effects.
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