Pred and Insomnia

[Stillstargazing]

Morning all, So it's 4.20am and I haven't been able to get to sleep at all so have given up and got up. I've read that pred causes insomnia and I'm on the initial dose of 60mg a day and this is day 10. Does anyone have any suggestions or advice about this please.

[Caroline54]

My doctor offered sleeping pills I declined. Just got up when I couldn't sleep do Hobbies catch up on emails was nice to not be falling asleep all the time and have some energy .

[Caro12line]

Hi ... yes! I have no trouble falling asleep but wake up after 3 or 4 hours. I talked to my GP about it and she suggested a couple of things. No caffeine including tea after midday. Warm bath before bed. No TV, computer,iPad,phone etc an hour before bed (something to do with the light emitting). And of course if you don't already, take the Pred around 8am. None of these worked for me very well so next visit GP gave me sleeping tablets. Zopicione 3.75mg. I got these back in August and have taken a total of 6. So I take on average 1 a week and yes they do help. It is so good just to get one good nights sleep and then it helps me for the next few nights (maybe sleep rhythm maybe all in my head!). Hope this helps X

[Hidden in reply to Caro12line]

Some of us are more sensitive to steroid sleep disruption than others. It is an effect of these very high doses and in my experience went away at 35mgs (about 3 months in) but not before. I was truly bonkers at the end, pruning trees in the middle of the night and decorating for England. Like everything, it passes. i was exhausted when I finally could sleep after months of hyperactivity. So my advice to my old self would be to rest and do less but the steroids drove me so hard I don't think I had a choice. We survive it, that's the main thing.

[PenelopeVita-Finzi]

I have great sympathy for you. When I first went on to pred, I spent night after night with very little sleep to the extent that I felt it difficult to function during the day and would fall asleep at inappropriate moments. Even my largely unsympathetic rheumy was concerned and mentioned "steroid induced psychosis". My GP prescribed sleeping pills but I was reluctant to go down that road. I did, however, resort to them occasionally. Now I am on a low dose (7.5) of pred I do sleep better.

I would get up and read or do chores but since I have found the BBC Iplayer app, i plug in my ear phones and listen to an amazing variety of programmes and music. It means that at least I am resting and often drift off while listening. I have found it reassuring to have sleeping pills available which I can take if becoming desperate.

I hope you manage to get more sleep as your dose is reduced. Good luck.

[lillegirl]

I agree with all that has been said. Try not to go onto any screen, but it probably won't mak any difference, although could be habit forming. Listening to audio books, music (calming) taken the right actions prior to going to bed are good things to do, I am now down to 30 mg but still the same problems with sleep and mania after 3 months worth of reducing! Still waiting for a 4 hr sleep! House is in perfect condition, airing cupboard sorted, oven sparkling, wood burner painted ready for winter!!!!! No way out really, just go with the flow and make sure you take time out to rest, even if you don't sleep, I was told that I was overly sensitive to the steroids, as if it was my fault, but there are many of us, and unless GP experiences it has no concept of what it is like. Good luck to one and all, take time to rest!!

[allotment-lover]

I couldn't sleep on Pred, maybe got 4 hours a night when on 50mg and reducing. It slowly got better and I was back to normal at 10mg. I did take Zopiclone, only 3.75mg, for a bit, it was a godsend and I had no trouble coming off it which I did when I managed to sleep through till 7am instead of waking up early hours. I don't think hot drinks, warm baths etc would go anywhere near countering the massive effect of big doses of Pred. I think it did make me a bit mad, I also tidied every drawer and my husband still complains he cannot find things!

It does pass, you just learn to live with it and accept it.

Best of luck.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with all above. Fortunately my sleeplessness only lasted about a month when on very high doses. As others have said, do all the things you can to be relaxed before you go to bed, getting into a routine, if you aren't already. TV, tablets etc definitely a no,no. Try warm bath, milky drink, reading (nothing too exciting! ), and think positively - that you are going to sleep - not negatively.

I took a OTC sleeping tablet about every fourth or fifth night to try and break the habit, but without getting too reliant on them.

I never had a problem getting to sleep, but used to wake about 2.30am raring to go. It surprising what you can do at that time in the morning without waking others in the household.

And of course if you've done all the housework, you can catch up on your lost sleep during the day, although try not to get too much into that habit.

The good news is, for most people, as you reduce the Pred, you return to normal sleep patterns, so keep that in mind. It's just another temporary side effect that will go. Good luck.

[piglette]

I must admit I have never found an answer to the insomnia, although I do get frustrated by it. I listen to the BBC World Service and occasionally iPlayer.

[Stillstargazing in reply to piglette]

Thanks for all your responses. I'm amazed to find that I'm still not tired and in fact am full of energy and doing all sorts of household sorting out I've been putting off for ages. Did anyone try an occasional nightcap to induce sleep or is that not advisable on pred?

[DorsetLady PMRGCAuk volunteer in reply to Stillstargazing]

Hi again Stillstargazing,

A nightcap will do you no harm, but, like other things don't become reliant on it. Some say, it may get you to sleep, but if you wake up, it's all the more difficult to drop off again! Can't win, can we!

At the moment you're not feeling tired, because the Pred dose is still keeping you on an induced high. However, that will go in time as you decrease, by which time, hopefully, your sleeping pattern will have got back to something like normality. Hang in there, it does improve, honest!

[Content1]

Oh poor you, I know exactly how you are feeling! I have done 4 weeks on 60mg and it has totally wiped me out! I usually get about 2 - 3 hours sleep a night! Very weird as I just don't feel sleepy, mind you I don't have any energy either!! I have just had to go with whatever my body decides, sometimes I just lie in bed and rest but mostly I just stay up in a recliner chair and do whatever! Thankfully I am now beginning to reduce the dose so things may improve! I have had to give up work now and just do what I can. It was all easier when I accepted that I had an illness that needed some TLC from me and stopped trying to push myself to keep going! I will get going again but not yet! Try and stay positive and thankful that this has been detected and you are getting treatment, even if it's horrible!! Best wishes, Kath.

[Gosingen]

Hi, the "curse" of pred... I'm long-term pred user, and sleep eludes me often. For me no rhyme or reason, I've leant to live with it, and occasionally I take 4mg diazepam to help me sleep, always works for me, but only rarely, maybe once/twice a month. I like many others who have replied get lots of things done in the "quiet" hours. I'm a crafter so many of my items get started/finished during the night... at least I'm getting something done. In fact last night, it was the washing up, which I'd been too tired to see to. So it's got it's plus sides. But I do think avoiding too much screen work helps and the obvious, eg avoiding caffeine after 6pm. Good luck and rest assured your in good company.

[HeronNS]

I've been an intermittent insomniac all my life. These days a very simple thing often helps me - a spoonful of plain yogurt late in the evening. Considering that pred is such a major med I would avoid adding anything you don't have to to the mix. I actually don't much mind getting up in the middle of the night and settling down to catching up on the newspaper, or doing a crossword or something. In olden days it was quite common for people to have two sleeps - one early in the night, interrupted by a spell of wakefulness where they'd get up and do stuff (eat, have sex, whatever) followed by another stretch of sleep. So there is no hard rule that you must get your 7 or 8 hours in one stretch. There is a passage in a book by Doris Lessing where she describes being in a country (Middle East somewhere?) and waking up in the night to hear a gentle murmur outside. It turned out to be all the middle aged women in the neighbourhood, gathering in the courtyard to socialize unburdened by children or husbands!

[PMRpixie]

After totally losing my sleep pattern I finally asked my rheumatologist about a sleeping pill. He prescribed Trazodone. It's not a "sleeping pill" as such but has a side effect of making me drowsy. I really like it and am taking it without feeling guilty (as in, giving in to using a medication). He said to use it and that regular sleep patterns contribute to healing. I don't always make it through an entire night, but it's better than lying awake in frustration.

[moiraine]

I confess that I have a lifelong depression issue for which I take a maintenance dose of fluoxatine. I used to take it in the morning but transferred it to the evening. I now sleep like a log, perhaps a little too heavy but I cope better with that. Surprising how a good night's sleep also helps with the depressive episodes.

[mega]

I'm bringing up the rear here, Stillstargazing but when I had similar problems on a mere 40 mgs of Preds I decided to ignore the 24 hour clock and allow my body to dictate its needs. I could be awake at 3.00 am and asleep in the chair at 4.00 pm. I only had the mad activity for a few days but I did have claustrophobic nightmares which resulted in hours-long panic attacks (twice) when I had to have all the lights on and all windows open, even though there was snow on the ground and I still felt very jumpy and unsettled. I also had hallucinations a couple of times. My doc prescribed Lorazepan (I think it's called ) and a sleeping tab. I have used half a Lorazepan twice and none of the sleeping tabs, as I've come down on the pred dose. I think we're all afraid of becoming addicted to these 'mummies little helpers' but used sensibly, as others have said, they really can get you over the sleep problem, short term.

I do live on my own, so it is easy for me to adjust the clock to suit me but as soon as I decided I was not going to worry or get tense about the hours I was sleeping during conventional times, I became more relaxed. 3.5 years on, I still wake up with my bedside light, my glasses and my kindle still on at 7.30 am having put them on at 3.00 am - or in the chair with my laptop, just in time for Pointless or The Chase!

I do sympathise with you - you feel so isolated don't you, when 'the world ' is asleep and you're not? Try a mild 'tranquilliser' though, to get you over this initial period and if you're able to, treat those 24 hours as interchangeable .

[Stillstargazing in reply to mega]

Thanks Mega it's good to know so many others have got through the nasty initial high dose stage. Letting the body dictate would be my choice but unfortunately not one I can make as I am a single Mum to nine year old boy so have to fit in with his needs. Might start a bit of creative writing in the wee small hours instead. All the best.