Here I am. It's 2am here in Sydney. I went to bed at 10am and I'm still awake. I guess it's the recent start on 30mg of pred following diag of GCAand PMR. Does anyone have any suggestions. I've tried reading music and I don't even feel sleepy. I only slept 3 hours last night and spent a full busy day yesterday without yawning. What's going on? Maybe you UK members have some clues
Help sleep eludes me: Here I am. It's 2am here in... - PMRGCAuk
Help sleep eludes me
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Caloo650
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Hi Caloo650.
We ought to swop bedtimes. I am on a similar dose to you and am also sleepless. At its worst I was having 3 day time naps of around 60 - 90 minutes and nights where I never lost consciousness at all.
It is wearing off as my body adjusts to the high dose ( GCA). I find that I sleep for about 4 hours and then wake up every 2 hours from about 2 am until about 8 am when I give in and get up. At least I get back to sleep quickly now. Nothing really helped, I tried meditation apps. white noise, you name it. I moved to Entric Coated Prednisalone for stomach trouble and take it at bedtime. I think this has somehow helped. I also think that I got so seriously exhausted that my body wanted to follow insomniac patterns but I was just too tired. I hope you are lucky, like I have been and it just gradually wears off without recourse to drugs.
Thankyou. After reading some others i will try some magnesium tomorrow. I can't believe I don't feel tired. I guess it will catch up with me
I have not slept more than 4 hours a night since my first pred dose oct 18 and mire often a lot less!!
I was already on amitriptyline but I know a lot if member have great success with a low dose. You will need to see your doctor for this. I also trued numerous OTC sleep medications to no avail. My doctor after trying a huge amount of things tried sleeping tablets but these didn't work for me although again other people gave found zopiclone a help. Try things like sleep teas, chamomile and lavender are the most successful. I eventually bought melatonin from the USA as only a consultant can prescribe it here and I would have to wait at least 18 months to see one. This nudged my sleep from around 2.5 hrs to 4hrs for about a week before my sleep reverted again. You may be have more access to this in Sydney than here. I know magnesium moisturiser works for a lot of people so this us definitely worth trying. Please let me know how you get on. YBB
I'll try camomille tonight. I am sick of popping drugs and maybe the mag moisturiser. Anyway it's a very long night without the💤. I'm certainly getting through the books. One page used to put me to sleep
sounds like a plan. It doesnt seem to be an problem for everyone on pred. I find I do lots of things at night.!! Not housework of course!!
Hi Yes it's a common problem. I am currently on a high dose of Pred for a flare and am struggling. I didn't sleep at all last night, finally slept a few hours this morning and am now struggling to stay awake. i'd be interested in answers as I'd forgotten what it was like as it was years ago since I was like this. I find it sort of evens itself out, no sleep one night then OK then next, the important thing is go with the flow until things settle down. I do have the luxury of being retired and not having to go to work these days, and no great responsibilities either. I find mindfulness meditatations help to an extent, focussing on the breath without trying to change it, and if the mind wanders gently bringing it back. Some people say the old fashioned histamines that make you drowsy can help.
I have found meditation has helped in the past pre pred but as it's winter here I find I don't want to sit up for too long
You can do a body scan meditation in bed, might help you drift off
No luck this time
DorsetLadyPMRGCAuk volunteer
As I’ve said to others, my GP recommended an over the counter sleeping aid to be taken every 3rd or 4th night.
Not enough to become addictive, but enough to ensure at least one good night’s sleep and to break the pattern.
Other than that, it just a matter of accepting your sleep is going to be disturbed - so do something else - get up, have a drink, sort out paperwork, something as boring as you can ...and quiet if you don’t live alone!
Fortunately, my six weeks or so of sleeplessness coincided with our summer, so a cuppa in the garden early morning listening to the birdsong was no great issue. Not sure about a Sydney winter though 💁🏻♀️
was that when you were on the high dose Pred? The 6 weeks I mean
Yes, okay originally on 80mg, but kicked in about a couple of months in - so on 60mg ..50mg.
After that I (luckily) went back to normal sleep pattern.
Just had a look - looks like a normal Scottish summer 
Ahh...but the Scots are hardier than most....
Can't imagine why ...
My daughters complain about a Sydney winter and have even been known to don a woolly hat and fleece, but for goodness sake it’s a Scottish heatwave. 😂😂😂
My point exactly!
You're all mad. It's freezing. I'm getting up to take the dog for a walk at 7 and I'll have on the woolly hat and fleece. It will be under 10 c. If that's your Scottish summer????? Mind you I could do without our 40c humid summer days
😁 Only joking Caloo. We call it “Nesh” in Yorkshire. I think the blood thins when you move to a hot country and you feel the cold much more. Also, I will never get over both my daughters and all 4 of my grandchildren emigrating to your beautiful country. Possibly followed by me one day, if you’ll have me. Wishing you gentle sleep and sweet dreams. 🌸
I'm so lucky to have my boys and their children all within a 2 hour drive of Sydney. You are very welcome to join us here at any time. Now I'm going for a walk and maybe I'll sleep better tonight. So glad I discovered this site and group of caring people 😍
Breathe in that good sea air. It has a soporific effect. My lot moved down the East Coast to Sawtell and Coffs Harbour. They used to live in beautiful Bondi Beach - too expensive.
At 7am it is about 11C even here where I live in Italy!! Doors wide open to let the coolth in before it heads for about 30C in the afternoon. In the valley it will be low 30s this week - haven't had our summer heatwave yet ...
10C at 7am is about right this week in Edinburgh and it has a very equable climate compared with further north ...
PMRproAmbassador
Maybe you need to ditch the "full busy day" and try to relax when you can even if you don't sleep as such. I see magnesium has been suggested. Are you also n calcium? Some people find calcium with some yoghurt for supper helps them sleep.
I have the same problem. I listen to the BBC World Service and have heard some really interesting and different things. I have just given in to it.
I did too. I really felt pretty relaxed ( and educated) but crucially I don’t work anymore!
my body seems to have adjusted to not getting much sleep now and I can still cope with a full week in court but suspect if i tried for couple of weeks my poor brain might go into meltdown. I dont worry about it anymore. YBB
I think that is key, not to worry about it because it only makes things worse
Hi,
I did two separate three weekly courses of 30mg;20mg;15mg Pred then started to reduce again but l was wired all the time, l couldn’t sleep & l was up at 4am sorting cupboards, trimming random leaves off plants in the garden, l became a much more excessive version of myself, l barely slept at all.
Five years ago when l was having Chemo they prescribed Dexamethasone which was on top of my Prednisolone.
I gave up trying to sleep l turned my bed into ‘Command Control’ with laptop, iPad, phone, kindle. Luckily l have friends & family in various places in the world so pretty much always had someone to talk to but luckily No OCD this time, just very excitable.......
They upped my Amitriptyline but it didn’t make any difference to my 😴
But l found not fighting it & accepting it better, l tried moving the doses of Prednisolone & Dexamethasone but it made no difference as DXT is longer lasting.
After my experience l’d say go to bed, as you’re more relaxed there & if you can’t sleep don’t lie awake in the dark, read, watch TV catch up on emails etc, it will pass, you’ll adjust as you lower the dose.
Best Wishes
MrsN
I have been sleeping badly since menopause, nearly 20 years ago, and I, too, have had to resort to the spare room as my OH is also sleeping poorly (and snoring a lot) now at age 76. I think it's partly a function of age and retirement, and our much quieter shielded life since Coronavirus lockdown has not helped. I started Pred at 15mg, now at 3.5mg, and I've found no real difference with level of dose so I don't think it's the fault of the Pred.. I don't sleep or nap during the day ever, and still only get 3-4 hours a night if I am lucky. I have tried OTC antihistamine sleeping aids, magnesium, lavender, etc. etc. I walk, garden and exercise regularly, , but nothing helps. It's not too bad during summer and I've seen some magnificent sunrises recently, but it's cold and miserable and boring during the winter. An electric blanket and a good book are my saviours - no TV or screens are allowed in my bedroom. My GP will prescribe Zopiclone (only 2 weeks supply at a time) but it makes me feel spaced out and groggy. So I have come to just accept it and to keep as busy as I can during the day.
We are 73 and 74. This has hit us like a ten tonne truck. Life changed for me at the same time as lock down. Oh well I'll just have to get used to it. At least I'm alive and so happy to have discovered quite by accident this support group on the other side of the world
Can you get Tropics Lavender pillow spray and temple balm in Aus - used them last night - works for me
Just bought some magnesium. Will try that tonight and cammomile tea. I prefer a pillow spray i willtry and locate it thanks
Welcome, Caloo650.
The sleep thing is awful. It will settle down but like us all you will be impatient. You have to listen to your body and rest during the day. Sometimes, in the early days I'd be some way into preparing dinner when the brick wall would appear and I'd have no choice other than to crawl to the bed. My husband was amazing and just took over.
Others have mentioned mindfulness meditation which works for me although I had to persevere before results were seen. My system:
. Relax as much as possible from toes to head (remember fingers, face/jaw, shoulders)
. 2 or 3 slow deep breaths (stay relaxed)
. Feel yourself 'at one' with your bed
. Breathe in and out slowly making the exhale as slow as possible
. LISTEN to your breaths
. Let any other thoughts drift away and bring yourself back to breathing
This may take practise. Be patient. Good luck!
I think the majority of us on Pred have trouble with broken (or non-existent) sleep patterns. Then, worrying about not sleeping exacerbates the problem. Now, I have retired I am much more relaxed about it: "It doesn't matter, I can sleep a bit during the day."
My husband also sleeps badly (advancing age as well?) and neither of us mind if one of us puts on Radio National (UK equivalent, Radio 4). We usually drift off with boredom as often the topics are very obscure!
I have had the same trouble sleeping since starting November 2018 No matter what dose I am on.
I have figured out that if I take my meds as early as possible in the morning and don’t eat anything sweet after 3pm and don’t eat any other food after 7pm I sleep better, I think the steroids have a reaction with my blood sugar (side effect) therefore I need to burn off my food before sleep,
It’s worth a try
🤗
I have no problem sleeping I take one third of my pred one amitriptyline and my BP tablet a good book and most nights I am out like a light within half an hour.
Hi Caloo, i feel your pain ! but this is normal, Im on my second flare up so back on pred, but this time i asked to start at 15mgs . It took longer to work and sleep problems started to settled. But my brain was so wired by them i went 36 hours without a wink of sleep. I take 1 Amitriptyline 10mgs in the afternoon, and cant believe the difference its made to me. Buti would say one of the best things is to go with it as much as you can. I was almost obsessed with my insomnia ! Try and take it as it comes. The less pain your in the more you relax. Like piglette i find Audible amazing ! Good luck xx
In pre-industrial times it was considered quite normal for people to have 2 separate sleeps, they would go to bed a couple of hours after dusk, sleep for around 4 hours, wake up and do things (I haven't resorted to 'chopping wood' yet!) for a couple of hours and return to sleep.
This is an entertaining and informative read sciencealert.com/humans-use... - maybe around 3a.m.
I am relieved to say I'm retired, which makes a lot of difference. Much more relaxed about lack of sleep. Some hopeless nights, but they are less than they used to be. I try not to eat or have alcohol after 7.00pm. No screens within an hour of bed time and if I read - nothing stimulating! Main meal at lunch time and most of all - try not to worry about lack of sleep. World Service or 5live (UK) works well too - not music as there is too much variation to wake you up if you drift off!
It will get better - good luck
Hi I haven't read all your responses and it may not suit everyone. I use an over the counter sleep aid from the chemist (available in Australia) doxylamine succinate 25mg - sold as 'Sleep Well' or 'Sleep Aid' depending on the pharmacy brand. It's an antihistamine and works well for me. Some people don't like it at all as they say it makes them sleepy during the day as well but this hasn't happened to me. I use only a quarter to a half depending on the dose of Pred I am on - over 25mg I needed a half tablet. Some are concerned about a level of addiction but I have stopped this altogether when on a lower dose (under 15mg) and had no problem at all - I just used less and less - a taper really. So may or may not be of interest to you but I found it gave me a decent sleep and I just couldn't have managed without that.
Best wishes
I think I should be called Contrary Mary.
When I took Preds on the morning I didn't sleep and was on pain in the mornings.
I back racked my dosage an hour every day until I was taking the meds after breakfast.
I wake up pain free.
At night I take two Paracetamol with a glass of milk and either two ginger biscuits or two slices of toast with ginger preserve.
I only waken once in the night for about 20 minutes.
I feel so lucky when I read what others are going through. I have now reduced to 13 mg.
Reduction plan is now 0.5 mg per month.
I do hope you find a solution. tiredness is so debilitating.
Sleep has been disrupted since going on steroids. Rather than toss and turn I read for a while and/or get a drink of milk and the reading makes me sleepy then it's zzzzzz. On low dose now but still happens. Always tired but s short nap pm helps. Of course can't do if at work.
Padded silk sleeping mask, cool bedroom and a pile of books for when awake in the middle of the night. Plus try not to take your worries to bed with you (easier said than done though).
As I am now down to 3mg from 40mg over 18 month period this may not be of use, but will post. I take my prednisone by 6:30 a.m. If I have been sleeping poorly I take , generic, one half a Zanax, which usually gives me 5 hours before bathroom trip, and then some sleep after that. I prefer more than 6hours sleep, but can function on that much if I have to. A full Zanax is 5mg.
Hi Caloo650
I sent you a detailed reply and it has disappeared!
In short lots of us suffer the same and have no definitive answer I’m afraid. It’s key not to worry and take each day as it comes. Do what works for you in terms of relaxation. Try going to bed later. I can sleep through my favourite TV programmes, crawl to bed then wake up.
Never stay in bed if you can’t sleep and never go to bed hungry. A glass of milk and a biscuit can work a treat in the night.
I only ever got 2 hours sleep and cleaned the bathrooms to within an inch of their lives every single night for weeks on end. My eyes were falling out of my head but no sleep happened.
Rheumie said I was euphoric and prescribed Amitrityline 10mg at night and I slept 5/6 hours on it. When I reached 4mg from 50mg, for GCA/PMR, was able to stop it without problem. I didn’t like taking it but nothing else worked. Initially I would not sleep and not feel tired the following day but it isn’t good and shouldn’t be ignored.
Best wishes.
Caloo650, I don't recommend this for every night, but about once a week, I drink a mug of warm milk ( or almond milk if you are lactose intolerant) with a shot or two of brandy, then grab a dry book and start reading in bed. It always puts me right out, can never get past three or four pages! 😴 Just like others are saying, the main thing is to just relax about it. When we really need the sleep, our bodies will take over. Best of luck to you, 🙏 and let us know what works the best for you!
I investigated electro magnetic devices when my Mum had a bad time sleeping 3 yrs ago after a hip replacement. The device definitely works for us (I tried it before giving it to Mum to make sure it wouldn't make irritating noise etc), but we are all different. I do believe the inventor to be very genuine and he claims that very few people send the item back after the 90 day paid trial. I also think the website has a lot of interesting information on this field of therapy to assist the decision to go ahead or not. Since I have bought this is 'my' link, https: // earthpulse. net/#a_aid= gr8health (or type the earthpulse net without the link). Give the site a chance ... seems bit slow to load. While on the subject of devices. I also got my Mum a Revitive (.com) device which we believe does what it says and successfully assists blood circulation from the feet up. There are loads of testimonial YTs and write ups via the site or on YT direct which gave us the confidence to go ahead with their 60 day paid trial or money back circa 18 mths ago. Best results come from consistent daily/almost daily use. I like these things just because they are non invasive and don't take any extra time out of the day. However, anyone with heart issues especially should double check suitability. I think in both cases they might be unsuitable.
Hello Caloo650,
Hello from the Gold Coast, Aust, I am sorry to hear about you're not sleeping.
I have been going to a traditional acupuncturist and this has helped me achieve a deeper sleep for a longer length of time.
Also a couple of months ago on SBS Insight the topic was insomnia.
You may be able able to find the show on SBS Demand.
The medical specialist on the program had a very interesting viewpoint on sleeping tablets, he believes to only use them in the short term, not as a long term solution.
The anxiety that builds from not sleeping over a length of time is also discussed on the program.
Head Space is a helpful APP with meditations.
Hope your sleeping pattern improves soon,
if all else fails I give into it , with a hot milo and
watch "The Crown" on my laptop, in bed, fall asleep every time.
Best Wishes.
Thanks another aussie reply. I was beginning to think I was the only Australian suffering with it. I found meditation helped last night. The herbal sleeping tab did nothing. I can't understand why I feel so energised through the day not having had sleep. O well I shouldn't complain about that. An acupuncturist sounds like a good idea if this goes on. I'll look up the program on sbs on demand
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