Sleep

[Magpie48]

Diagnosed with PV,ET,Jak2

My only question is does anyone have sleep problems,I’m struggling to get too sleep.

I take 2Hydroxycarbamide at approximately 18.30 nightly

[saltmarsh]

Sorry about the sleep issue. I'm 76 and take 1 HU immediately after lunch, the other immediately after dinner. I do not have any sleep issues but honestly have never taken the HU before going to sleep. Good luck

[Magpie48 in reply to saltmarsh]

Thanks for your reply

Any specific reason for taking HU lunch time and then dinner.

[saltmarsh in reply to Magpie48]

I've always had a sensitive stomach so I just figured my body would handle the HU better on a full stomach. Seems to have worked for me. I also wanted to spread out the daily dosage. Might be worth a try.

[hunter5582]

Insomnia is not a commonly reported HU adverse effect, but a few on the forum have reported it. It should be noted that insomnia is a fairly common MPN symptom. I have experienced chronic insomnia for over 25 years, which I do believe to be related to the MPN.

Suggest you consult with your MPN care team. Perhaps taking the HU at a different time of day would help.

[LIGEBA]

I don't take HU but I have suffered with insomnia ever since I got PV. Before getting it I slept with no issues. You may just be experiencing one of the numerous symptoms of MPNS. I hope you find some way to get past it. Lack of sleep wreaks havoc on your mind and body.

[Magpie48 in reply to LIGEBA]

Thank you for your reply

I see the consultant in 3 weeks ,I’ll check with him to see if he has any information.

I don’t have any side effects from Hydroxycarbamide so I’m lucky that way,I do find PV ET a strange cancer to deal with.

I found my prostrate cancer easier to deal with mentally.

But you just keep going.

[Ovidess]

Yes, I have catastrophic insomnia weekly, but I'm taking Besremi for PV. Had milder insomnia on an off for more than a decade, but this is crazy making. Trying supplements but may have to take woozy-making trazodone offered by my NP. No sleep= crummy life. While we're on the subject of drug side effects or symptoms of PV, how about a painless blood red splotch on the eye whites? I stopped in the eye doctor's office and asked about it, but they think it is simply blood collecting from rubbing or irritation of some sort, not clotting. Correct?

[Lyndjs]

I'm sorry to hear you have sleep problems. I too have PV & Jak2. I have recently started Peg after being offered hydroxy or peg. I seem to switch between sleeping very well and insomnia. I'm putting it down to, early days. I'm sure the forum will be able to offer some suggestions to help, my post is more, you're not alone. I will see my consultant next week so will discuss this with him.

Take care xx

[Yarnhabit]

I have ET and started with insomnia during the menopause ( I am 58) most of my symptoms for that have abated but my sleep is not good. I used to be able to sleep well and deeply for hours on end but not now. It reached crunch point last summer when after most of the menopause symptoms went but I was still not sleeping well so I gave up caffeine and ( mostly) alcohol whilst drinking more water. This has improved things a lot but still not completely. I also have difficulty regulating my body temperature I keep getting hot and sweaty at night which is what often wakes me up and then I am awake. I spoke to the Haematologist who just prodded my spleen.

Sorry to not be much help, but you do have my sympathy.