Hydroxycarbamide twice a day - am & pm?

[HoundSept2022]

This sounds a very trivial question, but I know that you are a patient and helpful community.

I was diagnosed with ET JAK2 last September. I began taking hydroxycarbamide in October 2022, one tablet per day. In December my dosage went up to 9 per week and the consultant said that I didn't have to take two together in the morning, I could have one in the morning and one at night twice a week. In January the dose increased again to 11 per week. This month it's increased to 12 per week, five days of two tablets and then only single tablets at the weekend, as a treat!

What do other people do? Do you take two tablets at once? Or do you take them roughly 12 hours apart? I'd probably find it easier to take two each weekday morning, so that I don't have the worry of missing an evening dose. But I'll be very grateful for any advice/experience you can give.

Thank you all.

[Cat1001954]

hi I have triple negative ET I take 1 everyday in the morning it’s up to you if I was you I would take both in the morning if f you can cope with side effects ok if I feel nauseous on occasion I have ginger biscuits to help. Good luck

[HoundSept2022 in reply to Cat1001954]

Thanks - and thanks for the ginger biscuit tip.

[Foodies in reply to Cat1001954]

Hi. I’m CalR+ and have been on 2 hydroxy for over 3 years. At the start I took them in the morning and was wiped out with tiredness so changed to evening on pharmacist advice. Since November I’m on 3 Mon/wed/Frid and have continued to take them in the evening. It seems to suit me better. It means I go to bed early and crash out! Good luck.

[HoundSept2022 in reply to Foodies]

Tablets, bed, crash out. That sounds like a good plan. Thanks for your advice based on your own experience. I think I may give that a go. Those of you who take both tablets at night make a good case.

[hunter5582]

The standard dosing is qd (once per day) for PV/ET; however, some do split their dosing AM/PM. What works for each person can be different. Given that the half-life of hydroxy is 2-4 hours, you may find that splitting the dose is easier to tolerate. Suggest trying it both ways and see what works best for you.

[Cat1001954 in reply to hunter5582]

your welcome

[HoundSept2022 in reply to hunter5582]

Thanks, Hunter. I'll try two in the morning next week and if that wipes me out for the day, I'll revert to the morning and evening routine.

[Rem31]

I’m on a similar dose. On my two capsule days I take one around breakfast time and the other near evening meal time. If for any reason I’ve missed a dose then I add it into the next one capsule day. That’s just my routine and it’s worked for me for a while now.

[HoundSept2022 in reply to Rem31]

Thanks - that's good to know. I appreciate you replying.

[lakeview65]

HI, When I first started Hydroxy I took 2- 500mg pills a day. I split the dose, one in am and one in pm. Reason 1- No guidance from the Dr. or Nurses, they said up to me. Reason 2-I had hoped it would be easier on my liver and kidneys that way. Reason 3-I play tennis in the morning and when I first started I was getting really dizzy, so one at a time make more sense to me. I now take one a day.

[HoundSept2022 in reply to lakeview65]

Gosh, that's really helpful. I hadn't given any thought to my liver or kidneys. Hmm.

[mimduf]

I’ve been on 2 500 tabs a day for 4 years now. I take them both at night before bed. I found I have WAY less nausea and fatigue than if I take them in the morning! Anything with ginger helped me get through the nausea stage and now almost never have it. Ginger snaps, ginger ale, candied ginger, ginger lemon tea. My ET is under control and I feel pretty darn good for an old lady!😬 Best wishes on your journey!

[HoundSept2022 in reply to mimduf]

Thanks very much. Some of you take both at night, some both in the morning and some split. It's useful to know that whatever regime I try, I'm not alone.

I'm drinking ginger tea regularly anyway and it hadn't really occurred that it's probably helping with adverse side-effects. Fatigue is a problem and maybe I should try taking both my tablets at night like you.

Thank goodness for this community!

[ciye]

I take 2 a day, directly after breakfast, that way I don't have to worry about remembering to take one later on .....

[HoundSept2022 in reply to ciye]

Thanks. I appreciate knowing how others handle this. Given that I almost forget at least once a week, last night for example, I'm tempted to try two in the morning like you.

[Sheena2020]

I have PV and I also have to take two Hydroxyurea capsules Monday through Friday and one capsule each day of the weekend. I also think of that as a treat! I have always taken it at night whether it is one or two. It made me nauseous and very tired when I first started taking it so taking it only at night helped.

[HoundSept2022 in reply to Sheena2020]

Thanks very much. I hadn't thought of taking both tablets at night and basically sleeping through the side-effects. Everyone's replies have been really helpful.

[Catbells66]

Hi , I am also ET JAK2. I take two 500 tablets Mon - Fri , and 1 tablet Sat and Sun. (12 total) .I take them straight after breakfast washed down with a pint of water and my aspirin.

Up to now I've been absolutely fine, apart from getting tired after lunch. But I'm a terrible sleeper, so it probably that contributing to making me tired.

No question is trivial , I'm plucking up courage to ask if people on hydroxycarbamide can wear nail varnish !!! 😄

[HoundSept2022 in reply to Catbells66]

Thanks so much. I also get tired in the afternoon - and don't sleep brilliantly at nights, so I agree it's hard to know what's just me and what I can blame on the tablets. Sorry I can't help re nail varnish, but if you ask, someone out there will know. 😀

[franbt22 in reply to Catbells66]

Me too.....about the nail varnish 🤦🏽‍♀️

[HazeBlue]

I take my pills at night

[HoundSept2022 in reply to HazeBlue]

Thanks! All useful to know.

[Fernsong]

I take 2x500mg hydroxycarbamide (Hydrea in France) per day for ET Jak2. The first one goes down just after breakfast with a couple of large glasses of water (slightly warmed in the winter!) and I take the second after lunch in the same way.

I don't fancy the idea of ingesting two at a time and this method seems to work for me. I rarely forget the second one and don't stress if I do. I've been on them since 2020, so it's become just another of life's little habits now.

[Sivasi]

I took 14 a week, one in the morning and one evening. I don't know if you have to do it that way but it seems a good idea to balance it out. Maybe check with your consultant again. For me it worked well for a long time but after 5 years or so, not so effective so two months ago I started Anagrelide and am now on that plus 1 Hydroxy daily, with a view to coming off it altogether depending on how well I tolerate Anagrelide. My platelets have reduced dramatically as a result of the change, now 257 compared with 670 two months ago.

[HoundSept2022 in reply to Sivasi]

Thank you very much. It's good to know that you managed to take morning and night for several years. And hearing of your success with platelet counts gives us all hope. Thanks.

[summerdown]

I am similar to you. Now taking 10 HY a week. Was hoping to reduce but platelets not down enough yet. I take 2 tabs pm on Mons, Weds and Fris and one tab pm on other days. This seems to work for me. I checked with pharmacist about taking them in the evening - I take them at the same time as I take a 75 mg aspirin and a statin. Take when suits you best but any queries check with hemo or pharmacist. My platelets had gone down at last BT so seems to work. Hope you are managing. I also have ET and Jak2 and have been taking HY for a few years.

[HoundSept2022 in reply to summerdown]

Thank you. I am so glad I posed the question of my unseen friends in MPN Voice. The different routines and experiences you relate have been a huge help, and I feel happier and less adrift than I did 24 hours ago! Thanks.

[1219Smokey]

Read about the side effects please. They gave my husband those tablets for ten years,despite him complaining about the side effects which were ignored.

I lost Alan in 2020 . Once the side effects take hold which they did badly and which in

The end gave him bone marrow cancer and killed him.

So if you find yourself sleeping z lot and sweating as if a water tap had been turned on

then you have got problems. I find it very disturbing that the so called medical profession

will not own up to side effects even though they are written down in black and white.

I walk every day with a ghost beside me and in Alan's own words he always stated those

tablets were killing him.

Get an opinion from someone else who will be honest with you.

Look after yourself.

Regards

Sandra

[HoundSept2022 in reply to 1219Smokey]

Sandra - I'm so sorry to read your story and I know the MPN Voice community will be, too. We are all wary of side-effects, and we're wary of what the condition will do to us if left untreated. It's a bit of a tight-rope.

Reading daily posts and replies has shown me that people react differently to all the available treatments. We are all just really sorry that the medical profession seems to have failed your dear Alan. Thinking of you.

[Mishie14]

I also have ET JAK2. My journey started one year ago with Hydroxy, too. My doctor said to first take one in the AM for a week to see how I reacted and as I didn't react, she added a second one in the PM. That worked OK, too, for a few days but then the side effects really hit me--nausea, joint and bone pain came first. I thought 'no pain no gain' and kept going hoping to beat it. Then brain fog and loss of energy set in. Though I didn't feel anything related to liver, weekly blood tests showed liver enzymes steadily rising. While hydroxy worked for lowering platelets, it greatly disrupted my quality of life. Suggestions are get started slowly to hopefully build up tolerance for it, get timely blood work to monitor what it's doing to platelets and beyond, and watch out for side effects. Good luck to you!

[Wyebird]

hi, I used to take them together else I’d forget. I think at night is best because of side affects but there again on a full stomach I think is a good idea even clopidogrel and Simvastatin aggravate me occasionally and that’s after taking Lanzoprozle

[HoundSept2022 in reply to Wyebird]

Thanks ever so much. A number of people have suggested taking both at night, so I'm going to try that. I'd honestly never have thought of that by myself. That's the value of this lovely supportive group.

[saltmarsh]

Reading all the comments provides a cross section of what many of us deal with. I have pv and a sensitive stomach and am currently on 2 - 500 hydroxy/day. I was on 3/day but could not tolerate that due to stomach distress. I was taking two after dinner and 1 after lunch. Once I reduced to 2/day everything was ok. I take one right after lunch and 1 right after dinner with lots of water. Currently this seems to be controlling my numbers also. Good luck in finding the approach that works for you.

[HoundSept2022 in reply to saltmarsh]

Thank you - so many useful tips coming in. I really appreciate all of your help.

[Mirror368]

Hi to everyone. I have a comment about taking Hydroxyurea at night, It is recommended to drink minimum of 64 ounces of fluid to wash the toxic effect out of your system. I would be up at least five times during the night eliminating the water. How does everyone handle this?

Eileen

[HoundSept2022 in reply to Mirror368]

Oh blimey! Just when I thought I'd weighed up all the pros and cons. I'll be interested to see if anyone comments on this.

[saltmarsh in reply to Mirror368]

I can only say what seems to be working for me. Immediately after dinner I take my pill and drink 1 large glass of water. That's the last drink for me for the evening. Get up once to use the bathroom so I can live with that. I drink water all day though. Good luck.

[Mirror368 in reply to saltmarsh]

Thank you for your advice, I will try it.

[sbs_patient]

I was diagnosed with JAK2 positive PV back in 2015, and went on HU some time later. Initial dosage was 500 mg each morning, but as platelets continued to rise, this was raised to 500 mg each morning and evening. This worked well for a while but in the end caused severe skin reactions, so the dose was reduced to once daily, which didn't do much for my platelets and I needed frequent phlebotomy. About six months ago I went on Jakafi, which is working well for me so far. That being said, everyone's reactions will be different.

[HoundSept2022 in reply to sbs_patient]

Thank you. We do all react differently, but it's good to see some common threads.

[ET824]

I am taking the same dosage as you - 12 per week, after a number of tweaks. I also take something as my iron was low that has helped a lot (took about 6 months!) I just take 2 per day at the same time and 1 on the weekends. I don't think it matters too much when you take it - that's what I was told anyways. It did seem to make me a bit tired and foggy about 1/2 hour after taking it but those symptoms reduce over time.

[HoundSept2022 in reply to ET824]

Thanks very much. Good to know that you found your body adjusted over time. And it's been very reassuring to know from so many of you that when I take it doesn't matter too much.

[Meatloaf9]

Hi, I started out on 2 HU per day for PV. I took one in am and one pm. I got tired of having to do it twice a day so I started taking both in the am. It seemed to me that I found control of blood counts faster that way, I was having cbc every 2 weeks until counts stabilized, now perfectly normal. I never had any symptoms or side effects from the HU, lucky I guess.

After about 5 months we settled on 9 per week and have been on that dose for the last 15 or 16 months. I take them in the morning. My MPN specialist said it did not matter when to take them.

Best in finding what works for you.

[AndyKay]

Hello. I take two Hydro pills at the same time. Also, the same time each day.

[mbr8076]

Hi HoundSept2022,

I was diagnosed ET Jak2+ in February 2018 and started on 1/ day and increased to 10/week over time, 2/day on M-W-F. I take them both in the am. I was never told to separate them am/pm. I have been blessed to not have many side affects with Hydroxyurea; slight loss of hair. God Bless you on your journey

[HoundSept2022 in reply to mbr8076]

Thanks for the good (??) news story, well, as good as we can hope for, and the kind wishes.

[Hannah52]

On the days I take two I take them both together at night. I have been on them for 7years

[KentBee]

Hi, I have been on Hydroxycarbamide for 7 years and take two together in the morning which seems to suit me. I also use a 14 day pill container to ensure that I take the right dose on each day.

[HoundSept2022 in reply to KentBee]

Thanks. I've been really interested in how other people cope. I'm grateful for all your replies.

[JCmaatla]

I believe it is better to take them 12 hours apart so that the concentration remains consistent in your blood.

[AndyKay]

I take two tablets each morning and always at the same time.