Sleeplessness

[ciye]

Struggling to sleep on interferon, also really rough dry skin. On 45 been taking it for 9 weeks. Shattered !!!

[hunter5582]

Sorry to hear about the adverse effects. Please be sure to take this up with your hematologist.

I would suggest a couple of things. For the dry skin, a ceramide-based skin cream (e.g. CeraVe) may help. I use CeraVe to prevent eczema and it works quite well. Very effective for maintaining a healthy skin moisture barrier. I also use ceramide-based cleansers rather than body soap. It make a big difference in not drying out the skin. These are readily available products.

Insomnia is devastating. Unfortunately I have experienced chromic insomnia for over 20 years. There are some things you can try on your own that can help. Some of the herbal supplements are gentle and unlikely to cause a problem (e.g. valerian, chamomile, etc.) Melatonin will not make you sleepy but can improve the quality of your sleep. Tryptophan (what I call turkey-in-a-tablet) can also help. If none of that helps, then there are prescription sleep aids that can help. Based on my own experience, I would stay away from the meds like Ambien and Lunesta. They will knock you out, but disrupt sleep architecture. Sleep is not restorative. There is a med that is an exception to this called Belsomra (suvorexant). This med works differently. It reduces the amount of orexin (the stay-awake chemical) in your brain. It allows you to fall asleep without disrupting sleep architecture. I leaned all of the above from personal experience. I do not generally advocate for sleep meds as the solution, but there are times when it is the appropriate option.

I hope you can resolve the adverse effects and benefit from the PEG. Please let us know how you get on.

[ciye in reply to hunter5582]

Thank you Hunter, will definitely try the cervave. Not keen on sleeping tablets either. Will mention the Belsomra to haemo.

[hunter5582 in reply to ciye]

Belsomra comes in 5mg - 10mg - 15mg - 20mg.

Note that I tried all of the herbals and OTCs before shifting to a prescription med. They did help, but not enough. I definitely did not like the Ambien or Lunesta.

A couple of other things, sleep hygiene is really important for everyone, but especially when you have insomnia. I also do The Six Healing Sounds, a Qigong breathing practice before going to bed. It does help.

Hope you get it all resolved ASAP.

[Jynx93]

I’m on week 10 and I’m having the same sleep problems as you on interferon. Usually I finally get to sleep about 3ish and have to get up for work at 6am. I don’t want to go down the prescribed meds route as I have epilepsy and have to be careful not to take things that will interfere with meds for that. Haematologist suggested changing to hydroxy but I’m not keen. I really hope you find something that helps you get some sleep

[ciye in reply to Jynx93]

I was on hydroxy but changed to interferon as I didn't like the side effect. Sleeping tablets aren't for me it not natural sleep and the herbal ones don't really help. Constant fatigue and insomnia don't help my moods, I feel sorry for my family at times. My grandsons live with me and frequently tell me I am moody pants and need to chill 😂

Hopefully we can both find solution that works.

[EPguy in reply to Jynx93]

I've had some unrest on HU, esp in the last part of the sleep night. I get dizzy from HU in the AM sleep time.

Stress from having MPN doesn't help.

If you can stick with the INF it's worth trying. See the post "Long Term INF Results"

Also some are able to reduce the INF dose, or less often stop altogether, after time.

[Oscarsboy]

Its horrible, this lack of sleep. I am having exactly the same problems on hydroxy. Any suggestions very welcome.

[Jynx93 in reply to Oscarsboy]

I wish I had some to give you

[Runner999]

I have occasional periods of insomnia (not as many now not working !) .After a few disturbed nights or if I need to be fresh the next day, for say a long drive, I use the One A Night or Boots equivalent anti histamine pills (not the useless herbal ones my husband once bought!)

They fuddle the mind enough for sleep!

[Aldebaran25]

Sleep is a real problem for me, has been for a while (n.b. I am not on ifn) . I touched rock bottom when on oral corticosteroids for another condition, could only get a couple of hours' sleep a night for days on end, despite all the efforts. Now I am not taking those anymore (TG!), but sleep still eludes me although not nearly as badly. It kind of started with menopause, pre-PV or taking the HU, but I think the PV made it worse. Luckily I do not work anymore. Sleep hygiene is certainly important but some nights are hopeless and I have learned to accept it and not feel angry. Eventually, after a couple of bad nights I am so exhausted that I crash out and get 6/7 hours good, uninterrupted sleep. I cannot work out what makes some nights worse than others. I am careful about food in the evening (not too much, not too salty, no sweet things, not too fatty or hard to digest). I exercise every day, practice a little bit of yoga and meditation, avoid in the evening any tv/videos that will upset me . To help me psychologically, and talking about sleeping tablets, I have a rule: if I do not get a decent night's sleep for three days in a row I am allowed a zopiclone tablet (a hypnotic, only to be used as a short term drug). Effectively this hardly ever happens and the tablets eventually expire. But it is like a safety-net and it helps me not to fear the sleeplessness and to be less tense when going to bed. Any other "gentler" tablets I have tried (e.g. melatonin on the natural side or the sleep-inducing antihistamines) have no effect on me whatsoever. Should be a night-shift sentry for the army!