I’m currently on 7mg having reduced from the initial 15mg over a couple of years. I read on this site about the practice of splitting the dose and this has worked well until recently. I take 5mg around 9am and 2mg before going to sleep usually about 11pm but this can vary. I now frequently wake between 3.30 and 4.30am and apart from a trip to the bathroom (at 75 to be expected I think) I’m usually feeling uncomfortable, sometimes a bit nauseous and rarely get back to sleep for a couple of hours. I then doze and wake feeling pretty groggy until I get up and move around.
If anyone has any advice or ideas about this I’d be very grateful, I’m starting to dread bedtime!
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Jackie_boy
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Hi, I can't give advise about pred as I'm much farther back in this process than you. But I can empathise with your sleeping (or lack of) problem as I wake consistently between 3.30 and 4.30 and have done since the PMR started. What I find helps me to nod back off is any dull talk radio (or TV audio) where they keep their voices well modulated, with the volume very low so I can hear it, but only just.
I have to concentrate to listen and it distracts me from any discomfort but is not interesting enough to keep me awake.
Maybe it might help you? If not at least you'll know you're not alone.
Are you on coated Pred , it takes 4- 6 hours to get into my system? If not, you need to protect your digestive system with yoghurt or similar. I am wondering about the nausea. I have achieved good results changing my dose times and splitting my dose. I feel at my best in the morning having taken Entric coated Pred. at around midnight. I sometimes wake at 3 am and if I don’t start on-line Christmas shopping, I usually get back off quite well. I wake at 7 am and go back to sleep until 9am these days. I start to feel flu-- type symptoms at about 6 pm. I can head these off with a couple of mgs at a round 4pm. I need an 90 minute after lunch nap. I think these symptoms owe a lot to exhaustion. This evolves and changes over time.
Good morning, not that's its very "good" here, howling gale, rain and snow!! Going to be a "fun" walk with the dogs shortly!!! Anyway. If you are on uncoated Pred you could consider doing what a number of us do and take your Pred, either full dose or your split dose around 02:00ish in the morning, with some Greek Yogurt and a banana. I take my full dose, 7mg, around then and have no problems getting through the day. The nasties (the IL6's) come out to play around 04:00 ish and getting the Pred in a couple of hours before helps to nullify their activity before it gets started. Having the yogurt helps to protect the stomach.
I haven’t done any reduction for a few months because other issues(a bad fall and shoulder injury) made me think that one thing at a time would be best. So have been on this dose for quite a while and in these proportions. My best sleep is usually between about 11pm and the 3/4am wake up which makes it not too attractive to wake myself at 2am to take the second dose, however it’s worth a try. Thanks to all for useful and caring comments/advice.
It may still be your cortisol level being really low. Are you doing extra during the day at the moment or under any extra stress? It could also be low blood sugar and poor adrenal function can also do this. That can make one feel nauseated and the grog in the morning may be the fact that you are not sleeping in those vital early hours.
I take my dose at around 2 as well, but don't set alarm, but tie it to waking to pee or turn over, which for me is a semi wakeful act as I have to rearrange pillows.
Thanks for the useful links. I’m aiming to try a very slow and small reduction of the steroids sometime soon although my other autoimmune condition ( haemolytic anaemia) is triggered by the cold so it will depend on the weather a bit. I have 4-5 of the symptoms of adrenal insufficiency not sure if this is enough to qualify as that or simply age, stress or whatever so I’m quite cautious.
As you say, I wouldn’t be in any rush to reduce - winter is always difficult without added illnesses muddying the water.
From personal experience would say your adrenals are struggling at the moment rather than proven insufficiency- and the only way to get them to get going again is to be patient and a slow and steady taper when you feel able.
But do monitor how you feel and obviously speak to doctors if you are concerned.
There could be two possible factors here: one is that at this level adrenal function needs to start up again. The trigger for this is a very low level of pred in the blood at midnight or thereabouts. Taking some at 11am might be enough for that trigger to be reduced. You could try taking it a bit later - it takes about an hour to get into the system. Or you might be at just slightly too low a dose to manage the inflammation if the PMR is still active. Thise are signs I get that I am at not quite enough pred. And as both Snazzy and DL say - have you reduced that evening dose recently? Maybe shuffling the times a bit might help.
I've tried shuffling doses quite a bit, and have finally come up with 5.5 at 8 AM and .5 with dinner. That .5 with dinner stopped me from waking up around 4 AM, so I think I'll keep it while I lower the morning dose. If I take more than .5 with dinner, I don't sleep well, I wake up many times. Trial and error, trial and error. Every body's different.
I find splitting doses really helps. I take 5 mg prednisone + pepcid in a bit of banana at around 2.00 am, when I tend to wake. This really works and I wake at 6 without stiffness etc. I then take the balance of my dose 3.5 mg at 11.00 am with lunch. Yes, it is early lunch, but we wake at 6! I then rest for a couple of hours and doze. Yes, the fluey feeling later. Yes, listening to audiobooks all night. Really helpful. You need one that is dull enough that you don't want to stay awake for it, but it engages that part of the brain that would otherwise be making lists, and where the noise level is even. I find the biography of the Queen by Sally Bedell Smith good. Good luck. Jane
Ironically it was because I was waking up at odd times and feeling rough in the morning. I read on this site about splitting doses and hadn’t ever considered it but found it worked well for me, until this recent spell of 3-4am waking and feeling unwell. So as some of my replies are suggesting, perhaps my adrenals are stuttering as I was on a higher dose when I first started the split doses.
If I were you, I might be tempted to gradually revert to single dose again. I split my dose for a while at peak of a really bad flare, but was able to get back to single dose fairly easily. Basically I tapered off a morning dose, but increased my middle of the night dose slightly. At the time it was at 2 am. After a few weeks I accidentally took the dose at 11 and felt so well in the morning I've stayed here since. Haven't had sleep problems. But as my dose tapers, now at 4.5, I want to get back to a time which is most likely to encourage adrenal reawakening.
Yes, but I'm currently tapering to 4.5 from 5 so not a big dose. I have taken higher doses during this time, 10 once, but other than that always less than 10, but tbh my tapering has been a shambles for months, until I finally realized I could not get back to my old lowest best dose of about 2 mg without taking more time. I did find it easy to get back to sleep at 2 am when taking dose at that time, which surprised me, actually.
Regarding soothing background noise, I invested in a sound machine when I moved, and have found it really helpful for drowning out some subtle but irritating sounds in our building. I particularly like a theme called "brook" which includes some very hard to hear bird sounds. Listening for the birds through the babble of the brook is very soporific!
Like you, I split my dose as otherwise I am too dopey. This might work for you: I take 6 mg at 2.am when I naturally wake to turn over. I take it with pepcid in half a banana.Then 2 mg with lunch.
This may help make sense:
Graph of natural cortisol release in the body. I try to get my prednisone in ahead.
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How early should I take pred in the morning?
Sleep problems
Timing of Pred
Timing of medication
Waking up in the night 
