pred and early waking ?: I'm tapering slowly, down... - PMRGCAuk

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pred and early waking ?

diplodocus profile image
16 Replies

I'm tapering slowly, down to 4mg now and no PMR aches or pains. At 10pm every evening my eyes start to get dry and sore so I'm asleep ( with eyedrops) by 11:00 pm and I sleep pretty soundly until 4:00 am when I wake up thinking about work / family ./ repairs to he house etc etc . I've tried meditation and breathing exercises with partial success but mostly I just listening to the radio for three hours until it's time to get up

Pre PMR ( two years ago ) I would have slept 12:00 to 7 and the alarm would have woken me. So is is a 4mg dose of Pred enough to disturb sleep or have I got something else going on ?

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diplodocus
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16 Replies
Soraya_PMR profile image
Soraya_PMR

I doubt it’s the pred if this didn’t happen with higher doses?

Don’t know where you are in the world, but here the early sunrise wakes me earlier with light through the curtains. Maybe some blackout blinds?

Are you getting too warm? Keep your bedroom cool or maybe try a lighter quilt.

Are you hungry? Late evening snack?

Maybe write a list of jobs to do etc during the day. Add any extras before you go to bed, then hopefully you’ll be less likely to mull them over at night.

I might be inclined to break the cycle by getting up when I wake for a couple of nights, but maintain the same bedtime.

Are you able to nap during the day? 5 hours sleep isn’t really enough for good health.

diplodocus profile image
diplodocus in reply toSoraya_PMR

difficult to track what happened because before Pred I was sleeping terribly all night every night . Now the PMR has settled I'm in this 5 hour routine. I don't feel like I want to get up at four - I'm still tired on some level but my mind is racing. I don't get tired during the day and not much opportunity to nap but I would love another two hours sleep in the morning :-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

If you were going to have Pred induced disturbed sleep most likely it would have started at higher doses, so I doubt it's that this late in the day.

Perhaps if you have a good sound sleep from 11pm to 4am then, at the moment, that's enough for your body. Summer mornings don't help of course, assuming you're in northern hemisphere!

Trouble is, once you get into a routine it's difficult to get out, but I wouldn't think it's anything to worry about - just a nuisance!

PMRpro profile image
PMRproAmbassador

It may well be poor adrenal function - they are lagging behind the rate of your reduction and not topping up the pred to the level your body needs to function well. It is a commonly quoted symptoms of "adrenal fatigue" which is mainly an imagined situation. But there are mentions of insomnia in the medical literature too.

I have been on Pred since Dec and had sleep problems. At first I was only getting 2 - 3 hours sleep but gradually it has improved and I now get 5 - 6 hours. I have decided not to worry about it and accept it as part of taking Pred. I feel as long as I am resting listening to music or radio it is helping my body. Take care.

SheffieldJane profile image
SheffieldJane

You are probably reluctant to add another drug when you’ve tapered your Pred dose so well but I have found that 10 mgs of Amitriptylin taken an hour before bedtime seems to enable me to feel physically comfortable and to sleep for longer. The busy mind thing is a nuisance, try to keep to light subjects. My meditation teacher told me that this happens at 4 am because God is listening. I found that oddly comforting. It’s always the insoluble problems you worry about in the small hours.

Telian profile image
Telian in reply toSheffieldJane

What dose are you on SJ? The Amitriptylin was prescribed for me when on high dose pred and when I got to 4mg was told didn't need it - needless to say I stopped it straightaway without problem and have slept since - I never sleep longer than 6 hours though, could be an age thing as well...

SheffieldJane profile image
SheffieldJane

I am on 7 mgs and quite symptomatic, in that I get extremely tired, breathless and moody. The pains I have seem more arthritic than PMR. Is it alright to just stop Amitriptylin? My GP actually suggested that I take more when I was having nightly headaches - I declined and the headaches passed eventually.

Qubbie profile image
Qubbie

I've never been a good sleeper but I also awake at 4am . I think it's the prednisone. I only get 2-3 hrs at a time.

I have been taking melatonin before bed and that seems to help. Good luck

PMRpro profile image
PMRproAmbassador

One reason for waking at about 4am is that that is about the time the body releases the pro-inflammatory substances that cause PMR - and that continues even when you are on pred. I used to wake with a hot flush sensation at about the same time every morning before pred - if I woke before that and went to the bathroom I wasn't at all stiff but if I went later I was. On higher doses of pred it wasn't as noticeable - but if I am at my lowest dose it returns.

xdbx profile image
xdbx

I used to wake at around that time too. The main thing is that you're resting even if you're awake. Listening to the radio is good if it's nice things you're hearing :) Not the news and all that negative stuff! And never mind what your thoughts are doing. They'll do what they want so just let them and try not to get involved with them. It doesn't help to try and stop them. They're like a puppy barking at the waves. You can just relax and enjoy the whole scene :)

Is your room dark enough at 4am? Mine isn't but I wear an eye-mask now and it has made a massive difference. Cost about £15 for a good one but cheaper and less bother than getting new blinds or curtains! Took me a couple of nights to get used to it but it works. I sleep through now until just before my alarm goes off at 7am.

Mike1964 profile image
Mike1964

Hi Diplodocus. My sleeping patterns also altered about 2 years ago when I believe the PMR first started. I've only been on Pred for 4 months so can't blame that, thought PMPpro's comment above was very interesting. I went from laying in bed getting very frustrated 4-5 AM each morning to actually embracing it. I now happily get up 4'ish each day, I make tea and sit in the conservatory, depending on time of year I watch the stars or the sun coming up. I'm a Christian and have found this the perfect time of day to praise and ponder the big questions of life and the universe. Strangely now I would miss this time, I live in a busy house and have really learnt to appreciate "My time" Certainly moving from frustration to embracing has helped massively. Hope you find a break through soon.

diplodocus profile image
diplodocus in reply toMike1964

it is the best time of the day if you've got a reason to be awake ! I was thinking of investing in a dog if I'm going to be up with the lark. Interesting you mention your Christian faith : there so much discussion of mindfulness and meditation in our secular world. I'm thinking they are virtually like-for-like replacements for Christian prayer - certainly in terms of the benefits the deliver anyway...

Mike1964 profile image
Mike1964 in reply todiplodocus

Hi diplodocus, I definitely concur with the dog, I got outvoted last year and we ended up with a cat! no point at all. I work in mental health and have done some research into mindfulness, many of the focal points are very Christian/biblical, I certainly feel there is a lot of benefit to it. I would have to tactfully disagree with the premise that meditation is a legitimate replacement for prayer, to come into the very throne room of God is as awesome and amazing as it sounds. Trusting either your sleep improves soon, you get that dog and get hooked on 5AM walks or you manage to come to see the beauty and peace of being on your own with the universe early in the morning. Kind regards

Mike

Stella3 profile image
Stella3

You didn’t say how old you are.....so it could be age related. One’s sleep changes as one gets older. Are you worried about being able to get off the Prednisone entirely. I am down to 6mg and I know that I am concerned as I go down by l mg each month. Perhaps you could try to get to bed earlier and see if you get more sleep that way. Good luck

Hindags profile image
Hindags

I know I woke early on 6mgs. Now at 5mg I find I'm sleeping a bit better. I think that the exact dosage that can trigger these different patterns will be different from person to person. How did you sleep at higher doses?

I think that these lower doses that require that our adrenals to get up and working and coordinating with hypothalamic and pituitary secretions can be pretty challenging. I'm sleeping better at 5mg but my usual emotional equanimity is gone. More sensitive, more indecisive, feeling more vulnerable. And yet, my body isn't painful. I no longer feeling like a loosely linked bag of bones. And my late afternoon lows are definitely improving.

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