Hi looking for any help please, I am currently on 40mg of pred having started at 60mg, been told by rheumatology to stay at 40mg until appointment in July but my problem is staying asleep. I can drop off easily but I wake up at 4am and i cannot get back to sleep. I work full time and this is playing havoc with me, I cannot function as this has been happening now for around 3 weeks! Work have allowed me to work from home so I start at around 4.30am and then go back to bed at 6am and usually manage to sleep until around 8am but this can't continue as I still feel like a zombie, so any helpful hints or tips would be great. I have tried staying up later, chamomile tea, pillow spray and have just ordered magnesium spray, I have even listened to the shipping forecast 😂😂
Sleep problems: Hi looking for any help please, I... - PMRGCAuk
Sleep problems
I had issues on high doses, but resolved as I got lower.
It’s difficult when you work, but you have to catnap during the day when you can - hopefully yours will lessen as you reduce Pred
This mayhelp -
healthunlocked.com/pmrgcauk...
Thank you
I do sympathise. Have sleep problems too - either can’t drop off or wake around 3 and can’t drop off till about 6. If I have a run of bad nights I usually then sleep like a log! Its hard when you have to work though (am luckily retired). We did fit a good quiet ceiling fan in our bedroom and its been a game changer in hot weather!
I have been having serious problems with insomnia for the last 18 months or so.
Before that, when I started on Pred nearly 11 years ago I had my first experiences of sleep problems. I was eventually put on Amitriptyline which helped a lot for about 8 years, but I was still having to get up to pee twice a night and did have some very bad nights.
So about 18 months ago, I started having to get up 4 times a night and then started to have more trouble getting off to sleep.I came off the Amitriptyline. I tried all the obvious remedies and then contacted a sleep clinic They diagnosed me with sleep apnoea ( I had none of the obvious symptoms) and started me on a CPAP machine. That made my insomnia much worse so that I was having quite regular nights with no sleep at all. Then they put me on a CBT for Insomnia program which was brutal and ended up with me having the worst flare I had ever had. They kept insisting it was working but it really wasn't so I eventually gave it up in February.
I had 7 weeks on sleeping pills (Zolpidem) but you aren't allowed to stay on them, so I have been experimenting with Melatonin. You can get this on prescription for up to 13 weeks. It is OK but quite inconsistent for me. Many people do find it very helpful and it is a more natural product. I am still struggling to get off to sleep( often 1-2.5 hours) and getting up 3 times a night and still not able to use the CPAP machine.
I am not entirely sure what to do next. One thing I have learnt- keep calm and do whatever it takes to stay calm.You will not get to sleep if you are anxious as you brain gets the message that there ar things to be done. I was managing this but after a few bad nights , I am finding the sleep anxiety creeping in again- back to meditation for me!
Good Luck!
Thanks for the advice I was on amitriptyline 8 years ago I have just bought magnesium spray to try and hopefully when I can begin to taper things will improve. Am considering asking for a sick note to get some time off work.
Melatonin is not recommended alongside pred.
mountsinai.org/health-libra....
Thankyou for that.
I did run it by Prof Hughes before taking it and he couldn't see a problem with it.
Will need to think again.
From my research, NICE are not recommending it for people with AIs because they have not done any research on it.
There are not many other options I can find.
Possibly worth a try - but be aware that your pred might not be so effective and you might need a bit more.
I used to drop off to sleep in seconds before steroids, since starting taking them I will often still be awake when the birds wake up. I have just given in to it. I listen to the BBC World Service and try and relax. I don’t get up or eat anything. I might have a sip of water. It has improved as I reduce.
Morning Elsumia, sorry to hear of your problems. I had the same problem around thirty or so years ago with my OA and guess to a certain extent still do. We are all different and I'm not sure there is any particular treatment that works for all. For me, I very quickly discovered that not worrying about it was the game changer. Lying in bed tossing and turning, trying to get comfortable and in a non painful or less painful position, worrying about not sleeping etc., became more and more stressful. So don't, get up accept that sleep is not going to happen for the moment and don't fight it. move to a different room, go downstairs, if you haven't got one, get a good new or used recliner, move around, have a drink, brew, hot chocolate, horlicks (always a favourite with me) whatever you like, watch the TV for a while, listen to the radio, read a book/magazine even do a game on your tab. Walk the dog, i.e. relax, and then doze off, fall asleep in the chair or go back to bed. Now, I know a lot of this is against modern thinking, screens at night etc but for me it works and it worked for many years when I was working full time in a pretty stressful job. The important thing is to take the stress and the worry about not sleeping the way we may be used to.
I also had issues sleeping while on high doses but similar to others it slowly went away as I started tapering down. I take the prednisolone earlier in the morning with breakfast hoping that it won't have as strong effect on sleep by the time I go to bed. Might be worth a try in case it makes any difference in your case.
So sorry to read about your sleep problems. It is really tough when you are also trying to work. I am a lifelong insomniac and have always had BBC world service on all night with an earpiece that I put in as soon as I wake up. I find this regularly sends me back to sleep, even when I am fascinated by the prog I am listening too.
Is working from home a longer term solution while you have the sleep problem? I am lucky because I can work for my employers online...and they are much more accepting of this because of their experience during covid.
If you can relax and just build your day in a different way, it really helps.
I do hope you find a way of coping with this, without resorting to drugs. It seems to pass for most people once the pred dose comes down.
I am working from home at the moment, tried magnesium spray last night and I had a much better nights sleep so fingers' crossed for tonight. I feel if I can just break the cycle things will improve. Thanks for you help. x
You have my sympathy, I had great trouble sleeping at 20mg of pred. I used to listen to the world service and the shipping forecast hoping that it would soothe and hypnotize me! I also used to hold paws with my cat Daisey- thinking that we were the only ones in the world who were awake! I tried getting up very early and going for a short walk, I also used to read several books at a time as the pred had a high effect and gave me a lot of energy! When I was reading several books at a time I thought I must be particularly gifted - but it was the pred! I cannot remember at what dose - but as I reduced the Pred the sleeping went back to normal.
With the exception of getting up to pee 2X a night, I sleep well now. When first on Prednisone I did not. I found that Valerian tea worked as far as getting to sleep, Lemon Balm about an hour before bed was the best and then it leveled off after a couple of months. You can also buy Valerian drops. Are you able to get the time-released Melatonin? I've also switched to taking my Pred at bedtime (around 9:30PM) and stay up until 10ish. This way I sleep through the side effects (except for the peeing). This works for me and started as an experiment. I don't know if it's for everyone.
I empathize with you, because I had to get up at 5:15 for work as well and even though I also work from home, one has to have their wits about them. There were mornings I'd have to tell me Supervisor, "I just have to go and lay down for a bit". She was okay with that. Power nap in the afternoons if you're able. It will work out.
Like many of us on here, I too suffer with sleep problems and I'm on 7.5mg which is not a high dose. I fall asleep very quickly but wake frequently during the night, sometimes up to 6 times and at the same time have to have a trip to the bathroom. Every so often I take half an antihistamine and it works to a certain extent. I've had a sleep problem for many years, the prednisolone just makes it worse. Lack of sleep means that whilst I'm physically active still, I'm suffering from brain fog and my hubbie thinks I'm losing it!! Wish I had a solution for you and everyone else....good luck.
I had the same problem, would go to sleep easily and then wake up after a couple of hours with all my internal headlights on. My solution was an unpopular one, but I was very glad that my GP prescribed sleeping tablets - Zopiclone - and at once life became much more manageable. I took it for about a year, but reduced the dose in tandem with the pred reductions, and I didn't have any difficulty getting off it.
I got just a low 10 mg dose of amitriptyline every night..really seems to help..sleeping better than I have my entire life. Was always a bit of an insomniac before, so it's odd for me, honestly. Maybe try that, it's supposed to help 25% of people who take it (low dose, say 10-30 mg) with pain, too -which ironically, is why I got it to begin with. It was another shot in the dark before the PMR diagnosis.
So here we go. Your pred dose seems high to me 15 for PMR us nomal start dose higher usually involved GCA You are where you are so it just needs controllingI would split the pred into two doses 1 morning around 8am and one around 6pm .
You can try that as you taper too.
It helps as the pred is removed naturally from your body it takes around 16h! The problem can be if only one morning dose is taken then its down to zero in you body around 4am.
Also the dreaded 4 am wake up is classic for many reasons. Our body sleep pattern runs in 4 hr cycles so 4am sadly is wake up time.fir many but mist just turn iver and go back to sleep. But with no pred in your system you probably feel in pain so cannot get back to sleep.
Try the split dose for a couple of days and dont worry relax in bed and dont think if you wake up! Just.try and lay still and tell your brain to stop thinking it helps.
If it continues see you doctor i would advise.
Good luck !
The antiinflammatory effect of pred lasts a lot longer than its life in the body for most patients, 12-36 hours is the range for that, most are above about 18 hours.
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