Prednisolone and insomnia

[trebor65]

Hello, I've just joined this site. I've been on prednisolone following a diagnosis of polymyalgia in May. The daily dosage is 12.5mg. I've had trouble sleeping for many years, but now I just cannot get to sleep until 5 or 6 am. I'm physically tired but my brain won't switch off. I've read that insomnia is a side effect of prednisolone. Zopiclone/ zimovane don't seem to work. Has anybody found a way of overcoming this problem please?

[HeronNS]

Exercise and be outside part of the day. No late day caffeine. Avoid all screens for a couple of hours before bedtime (especially smartphone and computer). Have a light snack before bedtime so you aren't hungry. You'll have been advised to take calcium to avoid bone thinning from the pred, so take one of your daily doses with your bedtime snack. Read something a bit dull. Make sure your room is dark, with very little outside light coming in the windows. Don't worry about it. If you still can't sleep, get up and do something like a crossword puzzle which requires some concentration but might help you get sleepy. If you do get up, try to keep the lighting as low as you can but still see to do whatever your chosen slightly boring task might be. I've made sure I have a comfy chair I can fall asleep in and stay asleep until morning if I've had to get up because of sleeplessness (very rare since taking calcium at night). 🏨

[paddyfields in reply to HeronNS]

My Parkinsons nurse has prescribed a trial of Melatonin, the natural sleep hormone. Have not tried it yet . Has anyone experience of it?.

[Megams in reply to paddyfields]

Hi Paddyfields - yes I happily take half a 3mg melatonin tablet and in NZ we pay dearly for it - worth every cent especially when our sleep will no longer come when we usually have done everything else right.

Blessings

[piglette]

I find the BBC World Service is a good alternative if sleep is difficult. I have learnt all sorts of things from it.

[HeronNS in reply to piglette]

That's a good idea. I tried soft music a couple of times but mostly I just want quiet. What kinds of programmes do you get on the World Service? Unfortunately our CBC only provides various types of music through the night, and they cancelled our international programming several years ago.

[piglette]

They are mainly talking, documentary types, from all over the world. I hear news on there that is never repeated anywhere else! You get science programmes, adventure programmes, sport, music, a really good variety.

[PenelopeVita-Finzi]

Like you, I was never a very good sleeper but after going on to prednisolone nearly two years ago I became a serious insomniac with as little as 2 hours sleep a night. This, obviously, affected my ability to function well during the day as I am sure you are finding. Zopiclone does work for me but doesn't make me feel good and I don't want to take it other than very occasionally. I wish I could tell you a way of overcoming insomnia but I can say that my sleep pattern has improved as my prednisolone dose has reduced. I attended an all- day Sleep School (expensive) run by Dr Guy Meadows which did not cure me but has helped. You might try his book: The Sleep Book: How to Sleep Well Every Night. He has devoted his medical career to sleep problems and does take patients singly as well as running The Sleep School.

I have found that not getting up but staying in bed and listening to BBC radio (by plugging in to my IPad with earphones do my husband is not disturbed) means I am less tired in the morning. I steer clear of news programmes as being too stimulating and concentrate on BBC 4extra with its vast choice of drama and readings.

Good luck.

[AnneP01]

Maybe try listening to a book but not one that is too exciting. I usually fall asleep even if I don't want to. 😴😴 good luck.

[margiebell4]

I really do sympathise, mine is a similar story. I am down to 5mg now and I am back to just being a bad sleeper instead of not having much sleep at all.

Zopiclone doesn't help very much and makes me feel groggy so I only take it very occasionally. My GP won't give me melatonin. Life can be quite miserable without enough sleep, especially when you hear that it can cause long term health problems,as if we don't have enough to put up with!

[Megams in reply to margiebell4]

Hi margiebell4 - obviously your Dr has not walked a mile in your shoes to deny you of at least one of those sleeping aids.

I take half an Imovane (Zopiclone is generic in NZ & not as good I feel), so I reach for the Melatonin if the Imovane has not weaved its magic. I am reducing the Imovane in favour of the Melatonin presently which is purely my decision.

I'm not a fan of any form of chemicals foreign to my body simply because I have awful side effects, mainly gut sensitivities - being sleep deprived is cruel in the extreme without dealing with the other multifaceted aspects of PMR.

Abundant blessings are sent your way in the meantime & special thoughts.

[PMRpro Ambassador in reply to Megams]

Bear in mind that if someone is in the UK these are things that aren't always available in the same way as other countries. Melatonin isn't available to buy and isn't prescribed although I believe you can get a precursor to Melatonin but I don't know the details.

A UK view is: "Zopiclone (the substance name) will often work well in the short term, but it is not normally prescribed for more than two to four weeks. This is because your body gets used to it within a short period of time and after this it is unlikely to have the same effect. Your body may also become dependent on it when it is taken for longer periods of time than this." - so is probably far more difficult to get hold of than it may be for you.

[Megams in reply to PMRpro]

Hi PMRpro - From the other posts I gathered that Zopiclone was available in the UK - an assumption on my behalf.

I realize our bodies all respond differently & found the same sleep hypnotic (Immovane) effective even tho I have been on it for a while. The UK view you quote is standard & understandable - no one needs to create further problems with dependence. .

Melatonin could be bought online from USA here in NZ - not sure if this is still the case.

I choose to have it prx'd by my GP which I believe is a safer option all round. I also know what I am getting too.

My kindest once more & hope this finds you better

[PMRpro Ambassador in reply to Megams]

It is - but doctors tend to be very reticent about using any sleeping pills because of the addiction possibilities and are strongly discouraged from prescribing them.

Melatonin is used in certain cases but with a prescription - not sure of the legal situation there but if a drug is to be shipped to the UK and a prescription is required there you have to have one to order.

[JaquieOboe in reply to PMRpro]

Melatonin has no addictive potential and any doctor who says that should be disappeared. Melatonin is also useless and unpredictable. I've known a couple who found it weirdly stimulating. I just found it did nothing. Now I've taken to just enjoying night time noises, feelings.

[PMRpro Ambassador in reply to JaquieOboe]

I didn't say it was - but doctors tend to class all medications for poor sleep as addictive. And as I told you 2 years ago - melatonin isn't approved for use on the NHS in the UK except in very specific situations.

[JaquieOboe in reply to margiebell4]

sounds like time to change your GP. wont give you melatonin? who does she think she is? Dr No? what does she think you're going to do with it?

[PMRpro Ambassador in reply to JaquieOboe]

This thread is over 2 years old.

You have to remember that this is a UK-based forum and melatonin is not approved for general use on the NHS "it is only licensed in slow-release form to treat sleep disorders in those aged 55 or over, and can’t be bought over the counter. Supplements are sometimes prescribed off-label to children with sleep problems associated with conditions including attention deficit hyperactivity disorder (ADHD) and autism." Not the GP's fault.

[JaquieOboe in reply to JaquieOboe]

Nothing is all it does. I've had 3 female doctors in last 2 years who seemed to have No as default setting. A very disappointing lack of capacity for independent decision making. Just say no and you'll be safe they think.

[Hidden]

Try taking your prednisone early in the morning so you're not so high strung at night. That made a big difference for me. Also 5 mg of melatonin about one hour before bed time is very helpful. It's a natural sleep aid sold OTC in the USA. You can probably find some online at drugstore.com or Amazon.com. Good luck!

[trebor65 in reply to Hidden]

Thanks to all of you who replied to my problem with insomnia. It's good of you to share your ideas. I will try and build them into my routine and hope for some improvement. What a lot of supportive people. Thank you.

[PMRpro Ambassador in reply to trebor65]

One lady has said that she finds that taking her calcium supplement with a snack (supper it used to be called by our parents generation) before bed has resulted in a much better night's sleep. I think someone else said something similar.

[PMRpro Ambassador]

It should improve as the dose reduces - and, by the way, do that in small steps! For some people it improves with time too - your body has to get used to this change too.

In the meantime try to learn to rest and catnap - I read an article about chronic insomnia recently where someone said that while just lying there resting wasn't quite as good as sleep it was the next best thing. Most important probably is not to worry about it - learn to accept it for now. It will improve.

[mikldiamond]

Meditation might be a good avenue to get rest, Yoga is used in more than one way but one is to induce sleep. It is a guided meditation that takes you through relaxing the body first and with that quiets the mind and soul. A free app, Insight Timmer has many to choose from and even on utube.

May you be happy, may you have peace, may you be free from suffering.

[1Purplecrow]

Hi Trebor, I managed the insomnia issue by getting out of bed and giving myself permission to be awake. Eventually a cup of warm milk would coax me to go back to sleep.

That being said, I also gave myself permission to take a nap every day. It helped with the daytime fatigue.. Caution here, I use an alarm clock set for 1 hour. That way, no 3 hour daytime nap to further contribute to nighttime problem.

I am retired, therefore this system reduced the stress of not being able to sleep, which I found very distressing in the beginning.

And... PMR is a disorienting disorder...at first, everything seems just nuts!!! My best advice ...drumroll here.....! Give yourself permission to do what you need! This sounds simple, but as a modern culture, we are disconnected from being in touch with our body (and our mind) needs... Therefore, we continue to push when we oughta be stopping.

this forum is a great read in the wakeful hours, just sayin.....😜 Jerri

[Pat46]

I was originally taking 60 mg prednisolone and only ever managed 1.5 hrs sleep. I am now taking 35 mg prednisolone and am at last managing to sleep about 5.5 hrs each night which is absolutely marvellous. Maybe as your dosage comes down you too will get more sleep - fingers crossed for you.

[HeronNS]

My son took melatonin when he was on shift work. He says (I've just asked him) that it doesn't work like a natural sleeping pill, but rather as a way to reset your internal sleep cycle when it's off kilter. So you'd only take it for a week or so, not as a long term remedy.

This reminds me that at one time I tried valerian. I remember having wonderful refreshing sleep the first couple of times that I took it, but again I don't think it's good for long term use. Useful, perhaps, to break the bad habit of wakefulness?

We can buy both valerian and melatonin off the shelf at pharmacy or health food store.

[PMRinsdca]

I have also had trouble sleeping and tend to wake up regularly at 3 or 4 am. I have gotten into meditation (mindful breathing/relaxation) which has helped with the feeling of tense, stiff muscles, etc. For sleep there are lots of Guided Meditations and Sleep Hypnosis videos on YouTube that have helped me drift off or go back to sleep if I wake up too early. Worth a try!

[Jeannie29]

I also have this problem , as your post is 2 years old, am hoping you might have found the answer, if so would you please shaaaaare it with me

I wish you well

Jea

[trebor65 in reply to Jeannie29]

Hi Jea, I've tried most of the remedies suggested on this site and none work much for me. Doesn't mean they wont for you though. I'm only on 3mg now but am still an insomniac. I would recommend PMRinsdca's post on meditation. I've been practising it for a couple of weeks and I'm getting some positive results. As PMR says, worth a try.

Hope it works for you.

Bob

[LynneMary]

Get cd player or an iPod, or similar, and download relaxation 'tapes' - try Sleepio et al. Find headphones with small heads. Listen as soon as you want to go to sleep. Should be asleep in less than half an hour.

[JaquieOboe]

No! Partner on for 20 years. Same as you. No matter how much exercise, good food, no sleep till exhausted doze 5,6am. Could never get him to drop sugar though. He needed a lot. Couple years later I had to take short course of it. After 3 days I was hallucinating from no sleep, plus pills. Bit old for that. Very odd, dangerous stuff. People should be warned.