Hydroxy timing question: Hi everyone - my haemo... - MPN Voice

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Hydroxy timing question

WileyFrench profile image
33 Replies

Hi everyone - my haemo has asked me to take one pill one day, and two the next - alternating like that from now on. I think many of you also do that kind of thing. My question is: on my “two pill day” can I take them both at once or do I have to take one at morning and one at night? And if so, any idea what’s the reason for that? Thanks for your great insight as always.

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WileyFrench profile image
WileyFrench
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33 Replies
piggie50 profile image
piggie50

I take 2 on one day per week and my heam said to take them together and that’s what is says on the name label on my box. I didn’t ask why as it’s easier to take together. I’ve been doing this for 5 years.

WileyFrench profile image
WileyFrench in reply topiggie50

Thanks a lot - that would seem to be much easier indeed!

janwh profile image
janwh

I have to take two on Saturday and on Sunday - I’ve always taken them

together and have never had any problems.

WileyFrench profile image
WileyFrench in reply tojanwh

Thanks a lot - this seems like the way to do it!

gemneye profile image
gemneye

I take three one day then two next day

seven days a week

Each day I take them all at once with lots of water

I used to take in the morning for 10 years but now I take em right before I go to sleep for the last three years

Hope I made sense

it’s been a very foggy moments this week for me

Windy51 profile image
Windy51 in reply togemneye

Hi gemneye do you find taking Hydrea at night is better

WileyFrench profile image
WileyFrench

It makes perfect sense! Thank you, and I really hope the fog clears for you very soon.

Peter18 profile image
Peter18

I started by taking the double dose with one capsule AM and the second 12 hours later, reasoning it would be gentler on my system. My super haemo nurse advised me to take them both together in the evening. This seems to be more successful. Best wishes, Peter

WileyFrench profile image
WileyFrench in reply toPeter18

Thanks Peter. That sounds sensible to me and I shall do this!

Ebot profile image
Ebot

We should have had vote buttons! I too asked about the double dose and was told to just take them together as normal. I also take mine in the evening.

WileyFrench profile image
WileyFrench in reply toEbot

Vote buttons - what a good idea!😉

tracey1003 profile image
tracey1003

I take mine at night as well I always take them at night otherwise my spleen gets a bit iffy. Good luck Ben on it for ages no problems

WileyFrench profile image
WileyFrench in reply totracey1003

Thanks a lot, Tracey. It’s so comforting when I hear someone say they’ve been taking it for ages with no problems. I haven’t had any side effects either but I was worried that might change with a dosage increase. But my haemo says he treats sickle cell anemia children with at least double the dose I take and they’re side effect-free.

tracey1003 profile image
tracey1003 in reply toWileyFrench

Also I find if you do increase your dosage make sure you have it with food so doesn’t effect your spleen. Take care

Richinspirit profile image
Richinspirit

Hi - likewise all the other comments ..... hubby takes 3 twice a day and t2 daily for five days, he always takes the dose at the same time and altogether. Just keep drinking the water - it is really essential for dispersal and safe liver and kidneys etc. Good luck xx

WileyFrench profile image
WileyFrench in reply toRichinspirit

Thanks for this. And good reminder about the water. I aim for at least 1.5 litres per day for exactly the reasons you say.

Wyebird profile image
Wyebird

I take mine both at night because they do take you tired but it’s up to you and what suits you best x

WileyFrench profile image
WileyFrench in reply toWyebird

Thanks Wyebird. You seem to do what everyone else is doing so I’m going to follow the “in crowd” and do it too!

Swede profile image
Swede

I took mine once a day but my stomach never liked it. Now I take one in the morning and one in the evening. Actually, that is a lie, as I just been told to take one a day....but when I did take two a day it was true!

WileyFrench profile image
WileyFrench in reply toSwede

That seems like a piece of good news - to reduce your dosage!

Superwoman profile image
Superwoman

Yes when I have to take two on Saturday and a Sunday, I take together always have done, just make sure you swig them down with lots of water.

Jean

WileyFrench profile image
WileyFrench in reply toSuperwoman

And that is now my plan! Thank you Jean.

nivana profile image
nivana

I take 2 three days a week and I always take them together

WileyFrench profile image
WileyFrench in reply tonivana

This is definitely appearing to be the majority. Thanks very much.

Mujer profile image
Mujer

I used to take 1 morning and evening but was just so fatigued in the day. My haemotologist suggested I take them (now 3) in the evening and sleep off the worst of the fatigue. It has certainly made a difference for me.

WileyFrench profile image
WileyFrench in reply toMujer

I don’t get the fatigue but I’m going to go this same route too. Thanks a lot!

Grumpyfairy profile image
Grumpyfairy

Hi I take one a day in the week and two Saturdays and sundays together, but I take them first thing in the morning, have often wondered whether taking them later in the day would be better. Can I ask you all have you changed to evenings for a specific reason, and is it actual bedtime you take them? Jackie

WileyFrench profile image
WileyFrench in reply toGrumpyfairy

Some people mention that the meds produce fatigue so they take them at night before bed. I’ve been taking mine in the morning, but I don’t seem to suffer from the fatigue that some do.

Grumpyfairy profile image
Grumpyfairy

Thanks Wiley I may try it, I do get tired but think that could be the disorder itself. Jackie

katiewalsh profile image
katiewalsh

Hi. I also take mine at the same time but I’d suggest you drink 2 liters of non-caffeinated liquids daily. That seems to be what we’ve all been advised. If that much water is hard for you, drink decaf tea, etc for some. Although there are small amounts of caffeine in decaf, the amounts are small. Also water flavored with lime, lemon, cucumbers, berries help some folks. I can’t believe how far you’ve come. I remember not that long ago you were so very concerned about taking Hydroxyurea. Be well. Katie

WileyFrench profile image
WileyFrench

Thanks Katie. You have a good memory! Yes I was pretty anxious about the medication - about the whole thing. Frankly I still wish it would all just go away (😉), but it’s been this forum, and people like you on it, that have made the difference. The practical advice (and I’m definitely drinking the water as you advise), and the support have been invaluable.

Bridie123 profile image
Bridie123

Hi, I am on that regime and take the two together making sure to drink more water.☺

WileyFrench profile image
WileyFrench

Thanks Bridie. Have you been on the 1-then-2 regime a while? And out of curiosity did you notice any change in side effects if you started at a lower dose and then moved to this one?

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