HiWell I m a 68 year old lady so rather interrupted sleep has figured largely in my life anyway ( been on HU for 14 years) sometimes I sleep ok sometimes not. Maybe try taking HU at bedtime instead? Sorry, not much help am I?
I find if I don’t eat after 6 I sleep much better, and keep my intake of sugar ( chocolate, biscuits etc lower I sleep better) I’ m sure you ve read all the info re caffeine and alcohol, and drinking 2litres water every 24 hours?
It's not in side effects lists I can find. But there is this forum with a patient with sleep trouble:
<<I have been on hydrea for a at least 3 yrs now, in that time I have discovered overtime that I have developed insomnia. So over last few months I have stopped taking medication 1 at a time in an attempt to find out the cause. A few days ago I stopped hydrea and my sleep pattern is slowly returning to normal. Any of you guys noticed this side effect?>>
Hi JamesxyzI started taking Hydroxycarbamide 2 years ago and since have had very restless sleeps. I feel exhausted but just find settling very difficult and can’t keep my legs still. My GP has been very helpful and has prescribed a antihistamine to take at bedtime to help with this. Whilst this does make life easier I consistently struggle to settle in the evening and never have a solid nights sleep. My husband tells me I am constantly moving twitching and at times talking whilst asleep, I do dream and have nightmares.
Hello YBSx - I have ET/PV jak 2. I have also suffered from restless legs syndrome all my life. This disrupts your sleep and can also cause the constant moving and twitching which your husband describes. You can look it up on HealthUnlocked under Restless Legs Syndrome. I have found since I started on HU 15 months ago that my RLS is worse and I find it hard to get more than 4 hours sleep total each night. You also said your doctor prescribed an antihistamine tablet for you. These can make RLS worse if it is the sedating kind. There are some non-sedating types which are OK to take. I think you should look into this. If you were only wakeful that is one thing but you are suffering constant movement and one of the main symptoms of RLS is inability to keep legs still, especially coming on in the evening and when trying to settle down in bed at night. By the way most GPs are extremely ignorant about RLS as it is something they are not taught about in medical school. You might have to see a neurologist.
Hi Yes I suffer with sleep problems on Hydroxy. I didn't have problems before although I think some of the problems sleeping are also PV related eg. restless legs and itching which obviously cause problems dropping off. The other problem I have is that even when i drop off to sleep quickly, I suddenly find myself wide awake 10 mins later. Then I can't go back to sleep, sometimes for a good couple of hours. My best time for uninterrupted sleep seems to be between 2am and 6am, but that's obviously not enough and I am shattered the following day. I haven't found a solution to that unfortunately.
I have always had sleep issues to some extent but have found that I am sleeping better since switching from HU to Peg - not sure I can contribute it just to the switch in medications as I am trying to be more purposeful about sleep preparation in general but I have noticed a difference....
I've been taking HU since March and had many side effects but one stoll remains. I sleep longer, at least 9-10 hours a night. If I don't get that amount at night I find that I have to take a 2-hour nap during the day.
I have had sleep issues in HU but by oncologist said it’s not the drug so I did a sleep lab and found I had sleep apnea even though I don't snore . I just started a BPAP machine to see if that helps.
Hi, I used to take Hydrea at 5 pm, slept relatively well but always needed an afternoon nap (it was mostly 90 minutes). Since MPN specialist advised a trial of taking Hydrea much later in the evening, I now take it at 8.30 pm and sleep just as well but am able to get through many more days without a nap. There are still days, especially in the current heat, when I need a nap.
As I am a relatively fit 72 year old woman, obviously I get up a few times during the night anyway! It is all a juggle isn’t it?!
Good news is, after diagnosis and platelet level in the 800s just over a year ago, then believing that it was necessary to pick a time of day to take Hydrea and stick to it, it is cheering to realise that it’s OK to trial different times of day.
Specialist advised trial of late evening dose and, if fatigue levels don’t improve, to try morning. After reading your report, would hesitate, but we are all different.
I am also fighting with either peripheral neuropathy (clinical study pending, it’s not diabetes) or erythomelalgia in the feet. That is the ET, not the drug.
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