Insomnia and hydroxy

Hi doubles up on hydroxy six weeks ago and struggling to cope with insomnia, l feel both exhausted and speeded up not pleasant. I'm 70 years old and certainly not physicaley up too going without sleep, has an increase in hydroxy caused this effect in anyone...

[Mazcd Partner MPNVoice]

Hello Adiewon2, I am so sorry to hear that you are having these sleep problems, I would advise that you contact your haematologist or your haematology nurse specialist for their advice. Best wishes, Maz

[Hidden in reply to Mazcd]

Thank you so much lm speaking with my hematologist on Thursday usual telephone consultation.

Regards Murina

[hunter5582]

Hydroxyurea can cause asthenia (fatigue) and daytime sleepiness. it is a common side effect. Never heard of it causing insomnia per se. Insomnia is pretty commonly reported with MPNs. It may be linked to the overproduction of inflammatory cytokines, an aspect of MPNs that we are starting to understand better. I also experience chronic insomnia. I have for many years. I do believe it is MPN-cytokine related. I found some things that work for me. I hope you do likewise. DO ne sure to follow up with your care team.

[Hidden in reply to hunter5582]

Thank you yes l also feel it is related to my MPN apart from zopiclone which is addictive and chamomile which lm allergic too l don't know what else l could try do you have any suggestions that l could try.😊

[hunter5582 in reply to Hidden]

If you have not tried Cognitive Behavior Therapy for insomnia, that is a good place to start. I include a Qi Gong breathing practice in my sleep routine call The Six Healing Sounds. Done properly, it does help.

There are other herbals that can be helpful, including valerian and Relora. My experience with these is that they tend to support sleep, but are mild agents. Melatonin does help with quality of sleep, but does no make you sleepy per se.

Trazadone (also an anti-depressant) is used as a sleep aid. it is OK for long-term use, but does not work for all. It helped with sleep did not work out for me due to side effects.

You are correct about zopiclone being addictive. While some of the hypnotics sleep aids (e.g. Ambien, Lunesta, etc.) will help you fall asleep. they disrupt sleep architecture. You do not get quality sleep. There is an exception to this issue in the prescription sleep aids.

After trying many other things, I went on a newer sleep aid called Belsomra (suvorexrant). It works differently. Belsomra reduces the amount of orexin (stay awake chemical) in your brain. It allows you to get a more natural sleep and does not disrupt sleep architecture. Fortunately, my GP is very up-to-date and was supportive of me going on it. It is literally the only thing that ever worked without side-effects.

I generally do not support the use of long-term meds for sleep disorders, but really had no choice but to opt for this. Nothing else worked. I do believe my chronic insomnia is caused by deregulation of the JAK-STAT pathway/cytokine overload. The problem is not going to go away short of a cure for the JAK2 mutation. Chronic sleep deprivation is quite destructive and at age 65 I can't afford to be sleep deprived. I do not think my choice to use Belsomra is right for everyone, but it is what is right for me.

Hope that helps.

[Hidden in reply to hunter5582]

Just to say thank you letting me know about the practise of " 6 Healing Sounds" just beginning the practise it is my kind of thing.also included some CBT. I wanted to let you know about the Calm App another great thing in my tool kit l find very helpful.So thanks again

Murina

[hunter5582 in reply to Hidden]

Glad to hear that you found some things to help. Mindfulness is important for everyone, particularly when dealing with stressors.

[Wyebird]

I go through phases of insomnia. When it get really bad I take ‘phenergan’ I find it works well but leaves you a little groggy so take on the weekend as a lay in might be needed.

[Hidden in reply to Wyebird]

Hello Wyebird a couple of years my chemist suggested this antihistamine Promethazine.Unfortunatley it caused lots of uncomfortable fluttering in my chest which l was told was arrhythmasa my GP advised l come off it quickly, other side effects disappeared quickly.Thank you for your reply much appreciated.

Murina

[Wyebird]

Hope you find a solution soon.

[Hidden]

Hi PheksiThanks for your feedback most helpful. When l feel l need a quick fix to my insomnia l will resort to zopiclon, which are very carefully monitored by my GP. However l prefer alternatives such as meditations, healthy eating and living a holistic lifestyle.

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[FoggyFlo]

Hi Adiewon , I've never considered it being the hydroxychloraquine before, but I've suffered from increasing insomnia as my RA has gone on (6 years now). I've noticed it's worse the second and third night after my weekly methotrexate dose, even though I'm exhausted from that too, yours think I would sleep more! But I know other people with RA who suffer from regular insomnia, I think it's just part of having RA. I hope you find something that helps you. I've learned not to fight it, I just put the light on, read, get a decaf drink. It's regularly a 3 hour thing. Good luck with yours xx

[Hidden in reply to FoggyFlo]

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