Hydroxycarbamide - timing of dose

[Hbm1]

I was diagnosed with ET back in May and have been taking hydroxycarbamide 500g per day since then. One of the main side effects I suffer is fatigue. I take the medication in the morning along with a mini aspirin and a small dose of amlodipine for blood pressure control. I wondered if taking the HU at night would make any difference to the fatigue? Does anyone have any advice on this please?

[Mostew]

I take at night. Always have so don't know if it helps. Can't do any harm trying . I hope it helps .

[Hbm1 in reply to Mostew]

Many thanks for this. I guess it’s worth a shot.

[saltmarsh]

I've been on hu for 3 years now and alternate between 500 and 1000/day. On the days when I take 2 it's immediately after lunch and dinner with a full glass of water; otherwise it's after dinner. I do this med schedule to keep my digestive tract happy which seems to work. Unfortunately, fatigue is a side effect of both pv and hu so the fatigue always catches up to me by midafternoon. I am pretty active, start my day by 6 and am 77years old. The fatigue can be overwhelming at times and I've found not accepting it and getting a little rest only makes things worse. Good luck trying to figure out what works best for you.

[Hbm1 in reply to saltmarsh]

Thank you for this. I agree that it can sometimes be better to accept things but I’m always curious to know and understand why things happen, knowledge makes acceptance easier.

[Jgard]

Hi I was diagnosed with ET JAK2 last December . At the end of 2023 I started on 500 Hydroxy and baby asprin I take these in the evening and so am also on a low dose of Amlodipine I take after breakfast . My platelets came down to just over 200 so now on 500 Hydroxy every second day . I am fortunate I don’t have fatigue Platelets now just over 400

[Hbm1 in reply to Jgard]

Hi Jgard, many thanks for your reply which is interesting as your situation sounds similar to mine. My platelets at their highest were about 580. Since taking the hydroxy they’ve come down gradually and are now about 300. I asked the Haematology Nurse who did my last review if the medication could be reduced but she said no. Assuming my platelets are still stable at my next review I will ask the same question again as I feel that a lower dosage may relieve the fatigue and also other symptoms.

[Jgard]

I feel a lot better taking the meds every second day so fingers crossed it continues that way . Let us know how you get on at your next appointment will be interesting to see if they will reduce your meds . I have had to get bloods checked every month for last few months Haematologist wanted to make sure my platelets didn’t go too high but now allowed to go 2 months before next bloods taken

[Hbm1 in reply to Jgard]

I will keep you posted and thank you again. I just checked my last platelets and they were 247 (a bit lower than I thought) and was suprised that the haematology dep't didn't want to reduce the dose. But what do I know! 😉

[Ovingite]

I was diagnosed with ET in2017 and put on hydroxycarbamide. Like you, I suffered from fatigue on a regular basis, which was very disruptive. My GP ordered a blood test that revealed a vitamin D3 deficit. He put me on a 6 week course of high dose D3 and the results were amazing - fatigue was virtually eliminated. That was about 3-4 years ago and since then my haemo has adjusted my hydroxycarbamide dosage to find the optimum level for me (13 x 500mg capsules per week) and I take 1000ui D3 every day. I'm glad to say that fatigue is now a thing of the past.

This approach may not be right for everyone, but it might be worth asking for a D3 blood test.

Good luck

[Hbm1 in reply to Ovingite]

Thank you very much for this. It's definitely something I shall look into.

[TB66]

Hi like you I take the same but my consultant suggested I take them at night , to reduce the fatigue.. I’m still very tired but it’s worth a try

[Hbm1]

I think it is worth a try thank you. I'll check it out first with the haematology Dept.

[Wyebird]

saltmarsh is right not accepting it has made me bed bound. You must also fight it. To decrease it.,There is a fine line between the two. Years ago the best advice I read is keep your energy for what you want to do. So at the moment when you have energy look at taking short cuts. If you have a large garden make it easier to manage so that you can enjoy it. If you entertain. Casseroles are a god send followed by a bought dessert.

If I want to go out to a party. I stay in bed with a book all day.

Good luck

Work with it

[Hbm1 in reply to Wyebird]

Excellent advice...thank you.

[JOL13]

HI I take mine at night as it knocked me out during the day - though I still get fatigue.

My other symptoms since starting in May last year - are that my taste has changed and I get mouth sores. I have to pace myself at times - best wishes

[Hbm1 in reply to JOL13]

My sense of taste has changed too and I get a very dry mouth during the night. I’m going to check out the time issue with the haematology team and if they’re happy I’ll move to taking it in the evening. Thank you for your help.

[johnnyjumpups]

I am glad to see that others' sense of taste has changed since starting HU. I have always taken it at night. I also get very dry mouth. Lately mouth sores, but not sure it if was the HU or the jalapeno hummus I ate. HU has affected my appetite, so that I can't easily find anything I like. I like it for a minute, then dislike it and don't want to ever eat it again. I really hate this medicine.

[Hbm1]

Jalapeño hummus! 😱 You’re bold! But I sympathise, food/appetite is often a problem. The things I used to look forward to I no longer want. Buy hey, I’m here so it’s not all bad!

[ainslie]

if your Haem agrees I would try it to see, some report better at night but it varies a lot

[Hbm1 in reply to ainslie]

Thanks Ainslie I'm going to give it a go. I plan to take it about 5 pm to enable me to drink plenty of water! 😏

[Plavers]

As most others have said at night is the best time to take Hydroxy.

[Hbm1 in reply to Plavers]

Many thanks, I'm giving it a go!

[linphy]

Hi I was taking hydroxycarbamide in the morning and struggled. I changed to taking it in the evenings it has helped.

[Hbm1 in reply to linphy]

Thanks for this . I’m going to try it and will report idc.