Can’t sleep!

[Cokopops]

Hello. I am so very tired..feel like a zombie! I’ve been on hydroxy for 8 weeks now for E T. I sleep maybe 4 hours a night.. Is insomnia a side effect of this drug? I have night sweats and my legs hurt as well. Help!

[Cja1956]

I would talk to your doctor about your fatigue. Even though fatigue is normal among ET patients, maybe you need to have the dosage adjusted.

[nightshadow]

I agree with Cja1956, talk to the doctor, this seems extreme, HU may not be the best choice for you.

[Doggy1903]

Night sweats and general heat seem to affect some people.This may settle as your system gets used to the mediation.

Hope you can get good support from your team.

[Mazcd Partner MPNVoice]

Hi Cokopops, really sorry to hear this, fatigue or exhaustion can be brought on by Hydroxycarbamide and is also a known symptom of MPNs. Speak to your haematologist or your haematology nurse specialist for their advice. I hope you get this sorted out. Best wishes, Maz

[Pte82]

Cokopops, hydroxy causes magnesium loss impacting many processes including activating B1 needed for energy too. Magnesium glycinate is well absorbed and along with boron to increase absorption should help overcome your fatigue. One added benefit of magnesium is it keeps platelets from sticking together. Benfotiamine, a form of B1, offers benefits not associated with other forms. Check out thiamine hydrochloride, sulbutiamine, TTFD and thiamine mononitrate for their qualities. Always consult your health care provider before using any supplement.

thyroidpharmacist.com/artic...

news-medical.net/health/Ben...

christinebailey.co.uk/magne...

[Wyebird]

Maz has given sound advice I also suffer from insomnia at times. Sometimes I’m wide awake in which case I put it to good use. Then chill that day. Other times I listen to ‘smooth’ radio or bbc sounds I like the history ‘I’m dead to you’. Good luck

[hunter5582]

What you are describing is consistent with a combination of HU side effects and the impact of the MPN. It can be hard to figure out which is which. timing of symptoms can be a clue.

Asthenia (fatigue) and rigors (rise in temp with sweats/chills) are common adverse effects of HU.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

Insomnia and leg pains are very well known to those of us with MPNs. At the core, MPNs are inflammatory disorders. Deregulation of the JAK-STAT pathway causes the overproduction of inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms we experience. These symptoms are often more bothersome than the overproduction of blood cells per se.

Hopefully you are already consulting with a MPN specialist, not just a regular hematologist. MPN Specialist are far more aware of the impact that secondary MPN symptom burden has on patients. Just in case you have not seen it, here is a link to docs with MPN expertise. mpnforum.com/list-hem./

Pte82 mentioned magnesium loss. This is worth checking into. It can cause a host of problems, inclining leg cramps. My leg cramps vanished after i reached a therapeutic dose of Mg and got my levels back WNL.

There is also help for the insomnia. Be sure to follow up with your care team for assistance with this issue. I have found things that work for me. You can find help with this too.

Hope you get it all sorted out soon.

[Cokopops in reply to hunter5582]

Thank you ALL for your replies.It helps to you you’re not alone in all this. I think it’s time for me to find proper help with a MPN specialist. Thank you all so much. Xx

[Minu68]

Night sweats, bone pain, have both. For me just due to MPN, had them before diagnosed and Hydroxy hasn’t changed either. Only just starting to realise the fatigue that I have been having may also be due to this and not working an erratic shift pattern, as not got job anymore, not doing much in comparison and still get exhausted all of a sudden. I also struggle to sleep. Magnesium has helped a bit. Like wyebird, find listening to radio pleasant, not stressing about being awake too, and recently finding a rain sounds app is helping me to drop off. There are other sound apps too, including mindfulness to help you sleep ones, many free, but only you will know what sounds will help you by trying them out

xox

[givingITMybest]

I have a sleep disorder so can't say whether my ET or taking HU is responsible. But I can tell you about two things I use to assist in falling asleep and I use if I awake mid night. The first are sleep stories found in the app Calm. it also includes meditations for sleep. I've seen some documentation supporting this app for sleeping. The other podcast I'll listen to is "Sleep with Me". This guy drones on boring youth sleep. I have to say it has worked for me and I've had sleep issues since college days, and I'm in my 70's now. You want to check out suggestions for good sleep hygiene i.e. no computer prior to going to bed, keep room cool, keep room dark, avoid alcohol at night, keep a routine schedule for sleep and waking. all these things have helped yet I still get only about 6- 61/2 hours of sleep. Good luck and sweet dreams