Hi I have only recently been diagnosed with PMR and have been on 15mg of Prednisolone for 11 days, I seem to wake up about 2to 3 am every morning and have trouble getting back to sleep, usually I drift back off about 6am then feel terrible when I wake up does anyone else have this problem and if so any tips?
Thank you
You might try taking your Pred at this time with some live yoghurt. This is the time that the cytokines ( inflammatory) substance is shed in the body. You may find that taking your dose at that time improves how you feel later in the morning when you get up. I always had a lie down and afternoon nap in the early days of PMR which benefited me a lot. I still promise myself that on a bad day 2 years on. It gave me a better evening. When my insomnia got to be the most troublesome symptom, I was prescribed 10 mgs of Amitriptylin to take one hour before bedtime. This really helped the quality of my comfort and sleep.
The Amitriptyline worked for me too, came off it when I got down to 4mg with no trouble
Good to know!
10mg shouldn't be problem reducing. At 20mg I could tell if I missed a dose. At 30mg I had "withdrawal"when I forgot to reorder on my prescription. I realised how much help it was giving me then. 40mg now. It just means in baaaaaad fibro/PMR/pred days when all my muscles in my back and legs spasm, I can sub 20mg and have 20mg at night. It does make me dozy with pain killers but that is no bad thing.
Very much so, especially in the early months of Pred and the lighter mornings last year. All hail the afternoon nap!
I’m scared to have an afternoon nap in case it make the insomnia worse! Thank you for your reply
I’m the sort that if I wake at night, I don’t go back to sleep very easily. Also, for ever, if I am not settled by 11 I don’t sleep until about 2am. Having a nap hasn’t affected this at all. If I don’t nap I feel rubbish all evening, but the length of nap has shortened from 2 hours to 30 mins now. I’ve never napped before this period in my life, other than if I’m ill.
I was too. It made no difference. Remember that you are ill and sleep is a healthy response. I was a lot better for going for a lie down everyday.
Even 15mg is enough to cause sleeplessness for some people. It will improve.
Oh, I recognise that pattern! When I was first diagnosed (GCA May 2017), that was a common occurrence for me. I’d suddenly wake up from a sound sleep wide awake. Up 2-3 hours and then could find sleep again, only to repeat. I was assured that it would pass and it did, but unfortunately I was in that cycle a couple of months. No suggestions other than get sleep in when you can, i.e. naps.
Just had to go back up to 20mg and recognise this pattern exactly. I find it helps to get up and do something even it is just tv. I have decided to go with it and sleep when I need to, luckily I'm retired. I always have an afternoon lie on the bed even if I don't sleep and try to keep a regular bedtime. Eventually my body gives in and I manage several hours sleep in a night, but it doesn't last!
I asked one of the doctors that I work with for advice. He give me a list of things that might help. Use bedroom only for sleeping and sex (no tv, reading, etc.); don't lay in bed and make lists (things you need to do, etc.) or to try to 'figure things out', get out of bed and go do something and then come back when you think you can sleep, keep temperature cool, keep lights off or dim. Sorry, I don't remember all of his suggestions now. Did I do them? Yes, on the temperature. No on most of the others. I've always read in bed, so that didn't change. I didn't get up and go do something as that would be 'chores' and the thought of doing chores at 2:00 wasn't appealing. So, I wasn't a very good 'patient' in that I didn't follow his suggestions. Can't say, but they might have helped. Instead I stayed in bed and if I'm truthful, got caught-up on what was going on here. And then freak out the I had to get up at 6:00 am to get ready for work. Yep, I recognize that pattern!!!
Thank you
How on earth you go to work after that beggars belief ... I'm lucky am retired so no worries there, I used to get up at 2am and clean the bathrooms - every night for ages until I nearly reached euphoria, diagnosed by Prof D (first I knew about it until he said), - as mentioned in previous post he put me on 10 mg Amiptriptyline before bedtime - worked a treat. Still can't get over you having to work with all this going on....
There are quite a few of us still working. I’m fortunate that I’ve got compassionate and understanding bosses and co-workers. Plus, I have a desk job, which I think helps - I cannot imagine working a phyical job. Also, on days that I feel bad, I call in. No longer are the days of going when feeling ill. I treat myself better now. My director’s response ‘the goal is to keep you as long as we can; take what you need.’ I know, I’m really lucky!
I'm beginning to realise that now! - but wow, what an understanding boss - you are well appreciated and that's lovely as can be very rare. Hope things keep improving for you.
Thank you, Telian. And right back at you (improving)! Have a wonderful day!
I was like that every night for several months after I started on pred, so that would be from last August until a few weeks ago. I was so wide awake I just went with the flow and got up for 2 or 3 hours. I mainly watched old 1950s B pictures on Youtube while knitting or sometimes did a couple of hours on a jigsaw puzzle while listening to BBC World Service. In recent weeks, without making any special effort, I've found that I generally do sleep through, only til 5 or 6 am, but I was an early riser anyway. As I have GCA as well as PMR, I started on 60 mg pred per day. I am now at 25 mg. I don't know if it's simply the reduced dosage that caused the change but I'm grateful whatever it was. Fortunately for me I'm retired. It must be terrible to have to cope with this if you have to get up for work.
Thank you
Thank you I will talk to my doctor about this
Thank you for the advice
For months I woke between 01.50 and 01.52. yes it was that precise. It has eased to 4.55am now at 9mg.
You must nap. Sleep deprivation is literally a firm of torture. I actually get in bed and set my phone alarm for 40mins.
I was knackered yesterday and forgot to set my alarm and zonked for 2 hours. I am lucky that I have sleep helper. I just overdid it the day before and my body protested.
Sleep is vitally important. If your blood sugar is stablish try a banana or warm milk at 2am and then go back to bed. The tryptophan should help.
It will get better. This happened to me when I started and now I sleep right though the night. I also switched to My pillow pillow. )crazy i know but I sleep better. = although I hate the owners politics. I usually boycott any company where i hate the CEOs politics but this one I had to be a terrible hypocrite for my SLEEP! haha. Good luck
I sleep better than I ever have since childhood, 2 years in on 7 mgs. It’s a gift. The body catches up if it’s allowed to. I am so grateful not to be working anymore.
Yes I also have this problem. Sometimes its because of night sweats and other times I just wake up. In 7 months i've only had one good nights sleep naturally! I have been prescribed sleeping tablets but they make me feel worse. I occasionally have a nap in the afternoon and this doesn't change my sleep pattern
Hi, I was told by my doctor that it’s important to take the pred in the morning to reduce the sleeplessness. Just mentioning that in case you don’t.
Definitely I go through phases of waking up about 2am, and generally I am less likely to do so when I have had a more physical day and been walking or working in garden. Avoid eating too late in evening especially if meat. I wonder too if drinking wine makes a difference. After 1 one 2 restless hours I tend to return to sleep but as said by others this can mean a groggy start to the day!
Janet , As you can see your night waking is a common problem. I wake most nights between 2am and 4 am. My body is aching and sweating. I conclude the reasons are my Prednisone from the prior day is dwindling by then and the cytokines are being released once again. If it's only 2 or 3 am I try to fall back asleep and wait till 4:30 when I can take my Prednisone again ( if I do it before then I don't feel as well during the following evening ) I always get up though and go to my recliner to sit and cool off. i usually look at emails for a bit ( that's why I'm writing this at 5:15am!) or listen to a podcast. After awhile I will fall back to sleep still in the chair! I can't seem to take the Pred and go back to sleep in bed. I don't know why. This has been my routine for quite some time now. I still work but do so from home so easier for me to keep this routine. I've had PMR for 3+ years and have had sleep issues ever since I went on the Pred. I've taken Amitriptyline for years to keep migraines away and it iis also a helpful sleep aid but as you can see I still wake on queue each night. Hopefully you can find something that will work for you. However Just when you have it figured out something will change. It's the way this PMR rolls!!
Good Morning!
I suspect it's the Pred...I have a friend who has lupus and has been on pred off and on for most of her adult life. Her DH has told me about the wonderful breads and cakes she used to make at 3 a.m.
Thank you I can really see me making cakes in the middle of the night 😆
I’m sorry to say that I have the exact same problem. I also have difficulty trying to take a restorative nap during the day. After 3-4 days I usually collapse and sleep well then start all over again. This began immediately with the start of Prednisone. I’m hoping that it will improve as I taper. Until it does, I use meditation and breathing exercises to try to promote sleep response and when that fails me I catch up on my reading. Good luck to you! I hope you find something to help you! The experts here will have many good suggestions and you may find some relief!
Thanks for the information
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Link to study of nighttime prednisone taking
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