I recently asked for some advice about why I kept waking at 4 and got lots of help. I decided to start taking my pred in the evening, with the aim of having more on board when the cytokine s kick in at 4 and experimented with splitting the dose also. Some of you were interested in the results of my experiments. Annoyingly, there wasn't really any appreciable difference and i was so anxious about forgetting to take it that I've gone back to taking it all in the morning. At least off caffeine i seem to be going to sleep, just cant get past 4. Hey ho.
Sleeping after 4am: I recently asked for some... - PMRGCAuk
I take my pred in morning after breakfast and wake every morning about 4.30am. No pain or discomfort, just no ability to sleep past then. Only happened since starting pred and every so often, I get a night when I'm literally awake all night and just can't get off to sleep at all. It can feel 'pants' at times!
Yup, same here , and with getting up to visit the bathroom, it means I never sleep for longer than 2-3 hours at a time:thank goodness I’m retired!
I seem to get water retention building during the day and then my bladder gets rid of it in several trips to the loo between 4 and 5am. I don't know if the water retention is due to the PMR or the steroids (it is listed as a possible side-effect) but it's a bloomin pain with its timing. I can lose 3lbs overnight.
Yes exactly the same for me. I do take an over the counter sleeping tablet a couple of times a week to get a decent sleep. I also have post viral fatigue syndrome and no sleep is not good with that.
Should also say though that some mornings when I'm awake, I quite enjoy just laying in bed looking out of the window at the stars and listening to the noises off our meadow...can often hear tawny owls and muntjac deer. Like to just lay all cosy in bed and listen to the rain also. Try to turn a negative into a positive!
Me too. So different to when I was working. I hear owls hunting and foxes squealing and my resident finches ( in the Laurel tree under my window) waking up and quarrelling. Even more since lockdown. I often have deep sleep in the afternoon which is pleasant and dream filled. The trick is not to fight it. The naps have no impact on my sleep at night. Little gifts.
That was one of my biggest lessons....learning not to fight it! It became really stressful trying to get back off to sleep so I'd be able to 'function ' next day!....and the more I fretted about the fact I was still awake....the more anxious I became. Now when I wake up, I embrace it, and unless I'm feeling unwell, I engage in my version of 'mindfulness' and try to relax, get comfortable and listen to the night noises! I'm actually responding to this at 5.00am having just woken up! It's a very cold night outside but the stars are gloriously bright and clear! I don't seem to be able to sleep during the day however tired I am, but I'll often doze. This does mean that I usually have a good long sleep the next night though.
I know there's probably not a significant amount of things you can do to improve sleep patterns that are governed by medication, but I definitely seem to enhance my chances of a better night's sleep by being mindful of certain other factors that could effect it.....for instance, I don't eat a heavy or spicy meal close to bedtime. In fact I have my dinner at 5pm every day with a warm drink about 7pm ish. I rarely have anything food wise after this time other than water. Anything that causes the digestive system to work extra hard or may induce indigestion etc, I try to avoid. I also avoid alcohol and keep off my tablet/ipad and phone prior to bedtime. Reading always makes me heavy eyed and helps me drift off. I've also ensured theres minimum light pollution in bedroom and that it's ventilated and comfortably cool. All these things definitely increase my chances of a better night's sleep but of course, won't guarantee it. Sweet dreams everyone. 😴
I can hear a collective cry from the Forum "Me Too'!!There's lots of good advice already been posted with which I would heartily agree. Now I am retired too I simply don't worry about it (no need to be fighting fit for the next day). If I manage to sleep through to four or even four thirty, I count that as a good night. Last night I woke up at 2.30 and that was it for the night.
I try to switch the light off, after a twenty minute or so read, at 10 O'clock remembering that an hour before midnight is worth two hours afterwards.........
Neither can I on most nights, so I lie there and plan my day. However I do go to bed earlier than most, around 9.00 pm, so that I'm able to rest my body even if I don't sleep a full night. I've tried staying up late but it makes no difference. Another problem for me and for some other PMR sufferers is that I now have frequent pee breaks during the night which is, apparently, a side effect for some from the prednisolone. On the plus side the prednisolone is giving me the energy to get through the day, even at a lowish dose of 7.5mg, but I'd love to get a full uninterrupted 8 hours sleep! I hope things improve for you...
Me too, sleep pattern just dreadful, can’t seem to break bad cycle what ever I try.
I so agree with you. 4 am seems my time for waking up. On the plus side, I can message our daughter in NZ, I'm the only one awake in UK for her! I used to get stressed about being awake in the wee small hours but now I accept it
I go to bed at 4pm for one hour to get through the evening. I take pred after supper (very light as eat at lunchtime) and sleep well immediately I've finished reading at 11pm. There are no set rules alas. What works for one person doesn't for another.
Oh my goodness these posts are so reassuring! So many of us in the same boat (bed) sleep wise! I’ve been symptom free and off steroids for 5 years but have identical sleep patterns. I’ve never been a good sleeper but am worse now....often can’t get to sleep until 2-3am or go to sleep and wake then, sleep in about 2 hr cycles. I’ve stopped worrying about/fighting it but although on medication for other problems I have to conclude that, in my case, it is not steroids causing the problem.....very probably ‘age related’ I’m just over 70.
This may sound odd and frivolous, but I listen to Steve Allen on LBC online. So soothing. And very amusing when he debunks celebrities. Failing that, Melvin Bragg's 'In our Time' never fails. Choose the science ones! You even learn something (for the first 15 mins). I use earbuds so wife not disturbed.
I listen to the radio with ear buds. Guaranteed to make me drop off. I don’t know how the brain switches off! When I wake up it’s still playing, but it does the trick 😃😃😃😃
I take my meds abut 7.30 p.m. and go to bed late...around midnight (I am retired).I wake once for a loo trip but get straight back to sleep and wake about 8.30 a.m
I listen to Classic radio for about 30mins before I get into a warm bed and I use a lavender spray on my pillow.
Sometimes I actually sleep right through.
I feel so lucky.
I have had a weird sleep pattern whilst taking prednisolone. I had nights in the early days of 30mg where I was wide awake all night. I am now on 5mg and still have difficulty falling asleep even after taking 50mg of Amitriptyline! When I do fall asleep I go off for 4 to 5 hours then wake up.
I have adapted to this now and no longer worry about it. I reached the conclusion that stressing about it just makes it worse. I am not working either so it doesn't matter if I have naps during the day but that doesn't happen often. I just roll with it now and either read, watch a video or do some meditation if I can't get to sleep. Sometimes I do get a night when I fall asleep quickly and sleep for 12 hours! I guess this is the body dictating what it needs
It's a long time since I have slept 6 hrs straight. Loo break often about 2.00ish. May or may not get back to sleep after that. Usually when it is time to wake up properly! Not sure if it makes any difference if you are a lark or an owl. Seem to be resting more in the day with general fatigue.
Since changing to taking my preds at 2am I hardly ever get the 4 or 5 a.m. lying awake that used to be quite common. It's also markedly reduced the morning aches I used to get waiting for the pred to kick in after taking them with breakfast. I pretty soon got used to going back to sleep after the 2a.m. dose too. I realize it's not going to work for everybody, but I can thoroughly recommend it!
I just have to say that I did start to sleep badly when I hit the menopause. The steroids are probably exacerbating an already bad situation for me. It’s very very common for post menopausal women not to sleep, even without hot flushes. Before I retired I worked with a large group of women in a university and all those in my age group would complain of sleeping badly. The premenopausal ‘youngsters’ never joined in our moaning.
I learnt very early on in the '90's when my OA was really painful that tossing and turning in bed was not good for either mental or physical health. OA pain was slightly different to Pred related sleeping as my joints needed to move so staying in any one position for long didn't work. So I quickly got used to getting up, having a drink, reading, watching the TV, listening to the radio etc. With PMR I'm generally up around 02:00ish when I take the Pred with Greek Yogurt and a banana and then laze/doze, read, watch TV even do some work, send emails etc until about 06:00 then getting packed lunch etc for OH to take to work. Have to say it was harder when I was working but being semi-retired it is not a problem. Peter
I couldn’t stay awake past 8:00pm since early on in pred days. Thus, I woke at 4:00-5:00 am. ( chicken or the egg ? ). Decided to not fight it and that’s been the rhythm of my nights for 2+ years. Quick bathroom trips but I get 8-9 hours of needed sleep. My children think it’s weird but they think a lot of things about me are weird. 😀. In a loving way of course!
Hi S - me too 4 seems to be the lowest I can go without lots of pain. My Rheumatologist said recently that it might be I need to just keep taking 4 long term and not to worry about doing that!!! Apparently some people just don’t get off Preds at all! I will keep trying off and on with the really slow method though! And the insomnia is just such a bloomin pain in the neck too! I’ve tried everything but nothing seems to work! Good luck with your journey.
Hi Seraphina56. I started splitting my pred. and take 1 at the first loo stop of the night, around 1-2am, I just take it when I am back in bed, When I wake again, usually around 4, I go to the loo then drop Rescue Remedy Night on my tongue and it seems to send me off to sleep for at least 2 more hours. Don’t seem to be able to sleep more than 2/3 hours at a time but I was following this pattern before PMR and steroids.
Good luck with your experimenting, whatever works for you is good.
I too wake up at a bout 4.00am, and it seems to me that I don't go back to sleep. However, this morning, the time from 3.45 to 7.00am went by remarkably quickly.....I don't seem to be aware of sleeping after the early morning awakening, but I think at least sometimes I do! Quite agree that the most important thing is not to stress about it. I do hope your sleep pattern improves. Now that I am on 10mg. pred, I see an improvement, whereas when I was on 15mg night time was one ghastly experience.
Good Morning. I have just adjusted my day/night to waking up about 4a.m. I stay in bed sometimes stretching until 5:15a.m. Seeing I have my toast and coffee by 6a.m., I lunch about 11a,m, or anytime until noon. In the afternoon I have the usual fatigue so lie down and read for a couple of hours. If I have no company am in bed by 8p.m. reading for about an hour. I found it less stressful to give into sleep pattern my body seemed to want than to try to fight it. I am down to 2.5 mg of prednisone and don't want to "rock the boat." I am just hoping that sleep pattern may change over time.
Same here for me too. It's 4am. But why 4 and not 3 or 5? I've found that I can get 5 hours straight sleep until 4. I've tried starting my sleep from various times (lights out 10, or midnight) and it still comes down to 5 hours for me. Then it's a pee and a little more sleep. Then tired when I get up and snooze mid afternoon. So same boat, which seems a bit crowded!
I've started taking my Pred at 10pm and go to bed about 12. I am sleeping loads better, waking refreshed and not getting the fatigue during the day any more. Great result for me. Just shows we are all different and have to experiment to find what works for us. Thanks for the post which prompted me to try the opposite of what doctors tell you to do!
You aren't the first to find taking pred at night removed a lot of daytime fatigue. If you go to bed at 12, why take the pred so much sooner? If the doc gets iffy about return of adrenal function - taking the pred at midnight should solve that, the nadir will be at the right time.
I tried that, but because I have to eat something when I take the Pred I found leaving it too close to bedtime and lying down gave me reflux so I stay upright for at least an hour or two after eating. It seems to work. I'm still adjusting to life on 25 Pred having been on the I-M injections so long, forgotten how troublesome taking Pred can be.
Someone should do some research into pred and sleep patterns. There seems to be quite a few people who are on a 4 am wake up schedule. Add me to the list! I thought my sleep pattern was due to the habit of taking pred early in the morning because of pain. It was just part of my wake-up routine to be ready to go to work. I'm off pred now and don't have the pain anymore. I'm also retired so I wish I could break the habit. It doesn't seem normal but I have to say I'm used to it. It has now become the norm for me too.
Hello Seraphina56, of course I too have to get up for a wee,maybe twice,but sometimes I wake up about 3 and just can’t get back t o sleep.It’s so annoying because I have to get up at 5.30am for work.Othertimes I can’t even get off to sleep at bedtime even if I’m exhausted. Another thing that often happens about 4 is that I get woken up by a kind of heavy fuzzyness
in the backs of my thighs.I think that might be theCytokines.I take my Prednisone when I get up with breakfast .No two nights are the same for me.I never get enough sleep though.I don’t even have time to nap in the day so that’s not the problem.Hope your nights settle down.
I did a meditation course with a very spiritual woman from the Bramis Kamaris. She told me that 4 am was a special time because God was always listening. Oddly comforting.
Another one for the list! I've been down at 1mg for nearly 3 months now. No pains, twinges or stiffness. Bed at 10pm go off to sleep very quickly, wake for a wee any time between then and 4am. If I go off to sleep again I count myself lucky and if that lasts until anything after 5.30...thats a real lie in!
And another .... I do seem to sleep better if I’ve had a really busy day physically or outside in the fresh air. No problem going off but very often up by 3 for a wee & then it’s fingers crossed I get back to sleep. Very disturbed most nights by hot sweats which are guaranteed to wake me & then the mind just doesn’t seem to switch off. How I would love a regular 7/8 hours deep 💤.
Hi Seraphina. I wake up at 5.30 every morning feeling very zappy. So I get stuff I need to do done by 9.00a.m. Then wander through the next few hours gradually feeling sleepier. Fall into bed about 3.00p.m. waking up at about 6.00 p.m. Ruins my days but what can you do? I take pred before going to bed about 11 or 12. As everyone says, thank goodness I'm retired! I blame the pred as have never been an early waker before.Fast Track
My accupuncturist once told me Chi energy enters the body around 4am. He also said most heart attacks etc happen around that time but I've never checked that out. No idea what Chi energy is but it's obviously part of ancient wisdom that we wake around then.
"Researchers have found that when the HPA axis is overly active, it can disrupt your sleep cycles, causing:
shortened overall sleep time
Those sleep disturbances can wreak further havoc on your HPA axis, distorting your body’s production of cortisol."
I think taking pred disrupts the whole cortisol circadian rhythm and the complex nature of the HPA axis. Another possibility is that stress levels, infections and the like can wreak havoc on the whole system and lead to auto immune disorders.
My solution was to take 2/3 dose of my pred after I wake up, and take 1/3 at night. I tried other combinations but this worked for me well. So since I'm back at 5mg total pred that means 3 in the morning and 2 at night around 11 or 12pm at bedtime lately. I sleep usually till 9am so roughly 9 hours a night, thank goodness (since I've retired). If I do wake up to go pee, it is at around 4 or 4:30 a.m. I've found taking deep breaths and holding them and slowly counting to 15 or 20 then releasing the breath seems to send me back to sleep most nights.
Thanks for this. I’ll give it a try. I’m so envious, I haven’t slept that long for years.
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