Pred and disturbed sleep

[Horsewhisper]

Hello everyone, a bit of advice please. I had GCA diagnosed in March this year and I am currently on 30 mg Pred with a plan to taper very slowly. Having always been a good sleeper, I now find that without fail, I wake at around 4 am every morning, bright as a button. Although I am taking things easy, living a healthy lifestyle as much as possible and have good sleep hygiene/routines, I find it difficult to manage my energy levels during the day and really struggle with tiredness and fatigue. I take the Pred just after brekkie, anytime between 8 am and 9 am and I wondered if I took the Pred in the evening or split the dose am/pm would that make a difference to my sleep pattern? Just wondered if anyone had any views on this?

[SheffieldJane]

Hi there,

My sleep pattern is very similar - actually worse- I sometimes barely lose consciousness all night. In fact going from bedtime to 4 am would be a good night. My GCA start dose 4 weeks ago ended up being 40 mgs because of breakthrough pain at 30 mgs.

Because of gastric symptoms I have recently moved to Entric Coated Prednisalone. I take this at about 11 pm so that it becomes effective a few hours later. Like you, I used to take Pred with yoghurt at around 7 am. Disappointingly, this change has had no impact on my sleep. I have come to the conclusion that my body is just swirling with too much turbo charged steroid for now and I just need to ride it out. I have 3, 90 minute naps during the day at regular energy- dip times eg 10 am - 1.30 pm and 4 pm. In between times, I get things done and manage to have a bit of an evening too. Trying to resist daytime sleeping makes me feel desperate. Having these set naps is almost enjoyable and gives me a feeling of control. I am aware that this pattern will gradually change as I taper down to PMR doses and hopefully normalise a bit, nudged along by me.

During my PMR (4 years) experience, I had one period of early hours wakefulness and one after lunch nap. I took 10 mgs of Amitriptylin one hour before bed and this helped. It also caused an extremely dry mouth.

I do not want this to become a source of anxiety or an ingrained habit, neither do I want the spooky symptoms of chronic insomnia. This is my compromise and for me it is working. I am ill and this is part of managing that illness. I feel deeply lucky that I am at the time of life when I have this lack of responsibilities and the flexibility to go with the flow, for the first time, ever. My heart goes out to younger patients especially those who try to hang on to their jobs/ careers.

I hope this is of some use. Again it distils to listen to your body, go with the flow and cultivate patience.

[Horsewhisper in reply to SheffieldJane]

Thanks SJ - it’s helpful to hear of other people’s experiences. I too have to take a day time nap so that I can continue with some energy into the rest of the day/evening. I like your suggestion of having some sort of control - I think “allowing” myself to stop and rest during the day will help ease the guilt of sloping off for a lie down and help me to feel better about the whole situation. I think I just need to accept that this is how it is until I start to taper to a level where sleep becomes less interrupted. Thanks again.

[Tamtan2 in reply to SheffieldJane]

Same as you had a terrible time sleeping exhausted most of time I am down to 20 mg and the PMR has been tolerable and GCA just raising its ugly head now and again stick with it slowly coming down I sleep like a log 🤞🏼Crossed for taping in the near future. Take care. 🙏🏽

[DorsetLady PMRGCAuk volunteer]

Par for the course I’m afraid . You’re lucky that you get round to 4am - many wake much earlier!

I had same issue when I was on higher doses- fortunately it only lasted a few months, and was in the summer, like now, so not too much of a problem.

My hubby was still alive then, so I got up, had a cup of tea - very often in the garden, and just found something quiet to do.

My GP suggested an OTC, so not prescribed, sleeping aid to be taken every 3rd or 4th night - enough to get a full nights sleep occasionally, but not enough to become a habit. Worked okay for me.

Like you I’ve always been a good sleeper, and it only lasted a short time.

I wouldn’t take medication at night, likely to make it worse, and GCA patients shouldn’t split doses especially in first 6 months to a year.

Having a catnap - or just a rest early afternoon should get you through - hope so. And as you get lower on your Pred it should get better anyway.

[Horsewhisper in reply to DorsetLady]

Hi DorsetLady I replied to you but to the wrong post! A bit befuddled today! Thanks for your suggestions

[DorsetLady PMRGCAuk volunteer in reply to Horsewhisper]

Not a problem - happens to the best of us - especially if lacking sleep!

[LIVEORDIEHEREIAM in reply to DorsetLady]

"I wouldn’t take medication at night, likely to make it worse, and GCA patients shouldn’t split doses especially in first 6 months to a year."

Why not take split doses? I haven't heard this advise in my six months of reading every post on the forum. I have GCA and PMR. Is there something I've missed?

I started splitting my pred in March, five months after Dx, because I was waking up at 4 am and it has been eight hours straight every night since. But you are referring to splitting dose effecting something else, I imagine. Please enlighten me!

Thank you for all you do for us here, DorsetLady!

[DorsetLady PMRGCAuk volunteer in reply to LIVEORDIEHEREIAM]

My view is that taking a high GCA dose at night MAY make the sleeplessness more intense - unless it’s the version that is slow release.

There is some discussion on whether doses can be split in GCA, but generally we are advised to take as one dose and preferably in morning. The general consensus is that, particularly in early months, it is more beneficial to take one large dose than two smaller ones.

However, as we always say, you have to do what suits you best so long as your doctor is happy with it.

[PMRpro Ambassador in reply to LIVEORDIEHEREIAM]

There was a study on splitting the dose in GCA which felt it made no difference - although using alternate day dosing where you take more pred on a day but only every second day is discouraged.

My view is that you usually only require to consider splitting the dose because of a return of symptoms during the 24 hours before the next dose being due. If that happens - surely it is because of unmanaged inflammation and that must surely be a risk?

As for sleep being affected, that does seem to vary greatly.

[SnazzyD]

It isn’t advised to split doses with GCA. I gave up the idea of 8 hours sleep and the rest awake. Instead I lived on naps and life took on a weird pattern. On 30mg I had to have a 2 hour afternoon sleep to make it through the evening’s domestic tasks. If I felt bad I rested; tedious but necessary. This calmed down as the dose reduced and I was getting better GCAwise, but the afternoon nap was a feature until I was under 1mg, but that’s me. Don’t forget, it’s probably not all down to Pred, the feeling tired.

I used to take my Pred for bedtime because the initial effect was to make me wobbly and dozy is it was like a sleeping pill. Once that wore off I was awake at 4-5am.

[Horsewhisper in reply to SnazzyD]

Hi SnazzyD, yep I think the afternoon nap is a regular feature in my life now. On occasions where I have pushed through, by early evening, I can’t think clearly, have trouble stringing sentences together and just want to lie down anyway! Thanks for the tip about not splitting the dose.

[Topcar]

Hi I've come to the conclusion the disturbed sleep is a small price to pay for the time being in order to get this sight threatening illness under control!!! I was diagnosed in April and currently still on 50mg pred, I only sleep for about 2 hours at a time & never manage more than 5 hours in total any night, as SJ says just listen to your body and rest as you need, I regularly run out of steam after bursts of pred induced energy spikes!! We're getting used to living with this, I've tried taking my pred at different times then the side effects just happen at a different time too!! so I currently take it around 7am with a breakfast biscuit 30 to 60 mins after lansoprazole then try to sleep for a bit longer, not sure how I'll manage this when I'm back at work but as time passes & the dose tapers I'm hoping I'll get back to some sort of normality like I did with my PMR, patience is the key along with allowing yourself to accept the new normal of not feeling like your old self!! already quite a few of my early side effects have become less bothersome & as our pred reduces hopefully we'll all get bigger blocks of night time sleep!! Take care you're not alone myself and SJ are probably awake with you during the night!!!

[Horsewhisper in reply to Topcar]

Thanks Topcar - yes definitely trying to adapt to the new normal and I do miss my old self. Learning the art of patience has been an interesting one and slowing up in life generally has been a tough one. Not to zip around at high speed anymore, well, I can’t so I don’t bother trying! Taking time to observe and appreciate what I have around me especially during lockdown had been quite enjoyable and uplifting. It’s also good to know that other people are awake with the dawn chorus - it’s good to feel not so alone! Hope you are doing ok

[FnF36]

I was diagnosed with GCA last November. Since then and regardless of varying bed times I wake up after 1.5-2 hrs most nights. I am then awake for anything up to 3 or 4 hrs and am awake at about 4am most days and hardly ever able to go back to sleep. The waking hours are filled with reading, radio, music, tea, talking to the dogs although they find being kept awake very annoying!

I am currently on 30mg Prednisolone which I take between 9 and 10am. I tried earlier times but this range seems to suit me better.

I have tried a regime of specific nap times but again, napping when I feel the need seems to suit me better.

Hope that helps in that you are not alone. Wishing you wellness and safety.

[Horsewhisper in reply to FnF36]

Yes this helpful and thank you FnF for your kind wishes. Sorry to hear that your sleep is disrupted due to Pred, and it is comforting to me knowing that I am not alone! I find the time that I most need a daytime nap is early afternoon and take as long as I need to. Today it was a full 2 hours and I’m feeling a little more human now. Hope you are doing ok too

[PMRpro Ambassador]

If it is any consolation I have been going through a patch of waking in the night again and lying awake for ages before going back to sleep - on a dose of about 12mg! One of the most common waking times is about 4am - and I have always put it down to that being the time the body sheds the new batch of inflammatory substances. And I am more likely to wake then if I was late with the pred which I take before bed as that is how Lodotra is designed to work - and being late means the level in the blood won't be as high.

I'm pretty sure for a lot of people taking naps/rests during the day as needed makes a big difference over the whole 24 hours - it may seem a waste of time but it often gives a lot more useful time, especially in the evening.

[Horsewhisper in reply to PMRpro]

Thanks Pro, yes I’m with you on that one regarding getting useful time back later in the day having had a nap earlier. Having teenage kids in the house (in online classrooms) I can phase out and climb in to bed quite easily as they are busy. It’s being energised and “normal” around mealtimes, social times and generally being available and switched on as a mum - without talking a load of gobbledygook and looking washed out! I suppose it goes with the GCA territory and I’m slowly getting used to it! Hope you are ok

[Marijo1951]

From everything I've read on this forum, some degree of insomnia must be one of the most common side effects of pred. When I was on higher doses I would wake up before 2 every morning fully alert and wide awake - by contrast with how I was for most of the day from 9 a.m. onwards i.e. overwhelmed with fatigue. These days I usually sleep till 4 or 4.30 and very occasionally even manage to go back to sleep for an hour or so. I think all you can do is go with the flow and find things to do. When I was badly insomniac I knitted a number of items for charity while watching old films on YouTube. Of course, this attitude is pretty easy for those of us who are retired from both work and family duties. It must be so much harder for anybody who has to go to work or care for others.

[Horsewhisper in reply to Marijo1951]

Hi Marijo, indeed - insomnia being a side effect of Pred it’s something I need to learn to live with. I am getting to grips with juggling my down time with the needs of the family and to be fair, my teens are very understanding and helpful and let me get on with my daytime napping. I feel very fortunate that they are so accepting of my condition. I’ve also learnt to let go of the housework a bit and really not mind too much about the dust and dog hair! In my early morning wakings I catch up on HU forum posts, read the news, do a bit of online shopping and then make the most of a very quiet house whilst having a nice cup of tea. Thanks for your support

[Marijo1951 in reply to Horsewhisper]

At least they're old enough to be fairly independent. It must be very hard to have to look after small children or, as must be the case for many people in our age group, to be the carer for an elderly person or an adult invalid .

[Horsewhisper in reply to Marijo1951]

Absolutely- at least my kids can feed and occupy themselves, having the ongoing responsibility of caring for someone who is much more dependent on you must be extremely tough both physically and mentally. Hats off to people here who are in that situation

[Horsewhisper]

Hi SnazzyD, thanks for your helpful suggestions, I might try an occasional OTC sleep remedy so that I get a better nights sleep from time to time. A bit of respite from the ghastly feeling of sleep deprivation would be most welcome. I’ll continue with the afternoon naps as they seem to get me through and it seems from reading other people’s experiences that this is the norm. I’ve snuck off with a mug of mint tea and have my feet up as I write!!

[tangocharlie]

I've been reading a book about sleep by Dr Guy Meadows. He basically says stop worrying about whether you sleep or not, it only makes things worse. The book uses variations on mindfulness techniques to help. BTW you warriors with GCA I take my hat off to you - I was on 40 Pred a day for a couple of weeks once and was like a zombie.

[Horsewhisper in reply to tangocharlie]

Yes good advice indeed - I think getting anxious about not getting enough sleep just fuels the sleepless/anxiety cycle. I’ll try and go with the flow a bit more and accept that this is how it is for now. Not going anywhere or doing anything as shielded so actually not a bad time to be out of action anyway! Thanks for your reply

[Louisa1840]

Dear Horsewhisper,

I think all the above replies will have assuaged/affirmed your worries about not sleeping? I only have PMR and currently on 7mgs. I too wake without fail around 4 a.m but consider that a good night's sleep. I find I get "Walls of Fatigue" that hit usually around 10.30 am and then 1.30 pm. I have recently retired so I can nap and I DO (always prefaced by a chapter of the current book!). I look forward to these rest times and welcome them because they are essential to get through the rest of the day. We need to chill out a bit and not feel guilty for our need to rest. " All is well and all shall be very well "- to quote Julian of Norwich.

[Horsewhisper in reply to Louisa1840]

Hi Louisa, yes some very helpful replies and I like your point about not feeling guilty for our need to rest. I can now slope off for a nap during the day without feeling guilty and it is essential to have that rest so that I get through the afternoon and supper-time shift with the family. I also don’t feel bad about getting up from the table and going to put my feet up whilst the family clear away and wash up!

[Lyndaki]

Hi, I had exactly the same problem when first diagnosed with GCA & PMR & was on 60mg. Prednisolone. Full of energy at 4am!! Like one other person on here, I was advised by pharmacist to take a Nytol every now & then to try & Get a full nights sleep & that’s what I did. It just helps recharge the batteries! Thankfully I’m down to 4mg now....but still occasionally have problems.

[Horsewhisper in reply to Lyndaki]

Thanks Lyndaki, I will try a Nytol or similar just to get some respite from the sleeplessness now and again. I’m glad to hear it works for you.

[Lyndaki in reply to Horsewhisper]

Fingers crossed...& sweet dreams!

[Horsewhisper in reply to Lyndaki]

Thank you!

[Dambusters]

I had that problem too but I gradually moved mine later by an hour (Took with a biscuit and milk) and now take them with an evening meal. Told it should be about 5 hours before bed so it suits me - I go to bed quite late.

I wake up almost pain free (I also have an arthritic spine from a sacrum fracture so could be that) and tire about 4.p.m. so sit and watch TV (and sometimes nod off for half an hour).

I do wake once during the night (But always have since taking Furosemide ) and sleep okay.

[fairy100]

I was waking up about 3.30am but have found an eye mask works in helping getting back to sleep again. Worth a try - I use one of those free ones you get on transatlantic flights.

[Horsewhisper in reply to fairy100]

Thanks fairy100 - what with dawn starting to break at 3.30 am an eye mask is a good idea! I have one that I can dig out and try.

[Kath567]

I take my tapering 7.5 mg dose at 6:30 am . Lack of a good night’s sleep has always been a problem for me, and prednisone has compounded it. I wake 15 minutes after I fall asleep, then again at 4 am, if I manage to sleep at all. Unfortunately I have to work so don’t have time for naps during the day but do on the weekend. I do find an eye mask helpful, a calming, early evening stretch routine (ballet for beginners/seniors), evening walk, and sometimes resort to watching Escape to the Country on my laptop until I pass out. Making sure I am not hungry too. I also find telling myself on weekends I need the rest more than I need to do anything else helps. Hope you find something that helps.

[Horsewhisper in reply to Kath567]

Thanks Kath567 - I do Pilates style stretches in the evenings which help with relaxation and generally to bring in the feelings of sleepiness. I also have a mug of hot milk and sometimes a small bowl of cereal to stave off any hunger pangs before bed. All good advice, thank you

[gardenning]

I'm sorry you are having problems sleeping, exactly the same thing happened to me when I was first given pred, like you up until then I'd always enjoyed good sleep. I have been told that it's best to take pred first thing in the morning with food, which I still do. Regarding sleep disruption, my GP prescribed a low dose of amitriptylin which I take with my last meal of the day, at about 7pm. I am now sleeping well, but the fatigue and tiredness during the day are symptoms that I still experience.

[Horsewhisper in reply to gardenning]

It’s good to hear that you are sleeping well with amitriptyline. I tried this for help with nighttime choking episodes and although I slept well, I felt like a zombie during the day. I could try it again during shielding, as I’m not working so much now anyway and could possibly manage, thanks for the tip

[Hidden]

PMR only. Currently on 8.5 mg. Once I caved to my body’s altered need ( circadian rhythm change I guess) , I’m getting at least 8 hrs. of sleep. Asleep by 8:00, awake about 4:00+. Still have random times of daytime fatigue. Just sit and veg. Decided I’d not fight it ( one of my old “ shoulds” was 10:00 bedtime was normal 😏) and has helped. Hope you figure out what gives you best sleep. Lower dose did make things easier. Constant learning and adapting, isn’t it? My best to you. Meant to add that PMRPRO’s reminder about 4:00 cytokines makes perfect sense for me . Can’t normally get past that wake up time.

[Horsewhisper in reply to Hidden]

Yes it seems that 04.00 is the hour for pred induced awakenings! Hopefully with all the helpful suggestions here, I’ll find my way through, thanks Ipadmom

[Captainjonny]

Sleeping for 7/8 hours is a relatively modern phenomenon. Until the industrial revolution our ancestors would have enjoyed split sleep, actually getting up to do things after about 4 hours and then returning to bed for another similar period. If you fancy reading something when you wake up, you might try Dickens' "Barnaby Rudge" which mentions this or, for something more up-to-date, Robert Harris' 2019 novel "The second sleep". Perhaps we all worry too much about our sleep pattern? Whatever ... pleasant dreams.

[PMRpro Ambassador in reply to Captainjonny]

Yes - I have pointed that out before! I suppose it is the modern pattern of working? And artificial light.

[Hidden in reply to Captainjonny]

True that. I’ve always needed 8 hrs, but if I do wake in the wee hours, can return to sleep after 2-3 hrs and get the rest. Maybe I’m a farmer at heart. 😊

[Horsewhisper in reply to Captainjonny]

Hi Captainjonny, yes I think maybe because I am so used to being such a good sleeper, that to have this crazy disruption is all the more annoying! I have begun to accept that this is the new normal for me and if I need to sleep again in the daytime, I put my feet up without feeling guilty anymore! Thanks for the book suggestions, I’ll take a look.

[sara44]

It is very common to wake up around four to 4:30 AM if on prednisone I started on 40 mg and I’m now down to 21.5 tapering very slow due to a relapse and I still have trouble with nights sleep I also have hand tremors and I tremor inside and the exhaustion is overwhelming listen to your body take a nap go lay down when you’re exhausted as my medical doctor has advised overworking your body it’s not the thing that you need right now so when you feel tired it’s time to stop good luck and hope and hoping that this will help

[Horsewhisper in reply to sara44]

Hi Sara44, I too have internal tremors, particularly when I get overtired. Taking daytime naps certainly help and am happy to continue taking them whilst I need to.

[Nagswoman]

Preds do stop you sleeping. I expect that if you take it at night you may get even less sleep. I just gave in to it and read my Kindle. It does get better as you taper.

[Horsewhisper in reply to Nagswoman]

Thanks Nagswoman, maybe as I start to taper further, things will start to improve in the sleep front.

[Luciejc]

I have always been a poor sleeper and unable to function during the day with little sleep. I have had a prescription for zolpidem for years, using when needed only..every few weeks . My rheumatologist has continued prescribing for me. She feels being addicted is better than not sleeping for me.

[MsDirecto]

Interesying that we all seem to wake up around 4 - 4:30

AM, regardless of where in the world we live.

I have found less side effects (tapering 30 mg > 25) and fewer sleep problems by taking half between 8-10AM and the other half about 10 PM. Usually go to bed around midnight.

If I don't seem to be falling back asleep around 4, I prop myself up in bed, and read. When I get interested in what I am reading, I don't think about sleeping. Apparently it works for me: sometimes I find myself waking up a few hours later - still propped up.

Thank everyone who talks about taking naps. I never give myself permission to do that. I live alone, so there is no excuse.- However, I do find when I am fatigued and sit down in a chair, I fall asleep. It sometimes happens in the late Am, but always happens after walking my dogs in the afternoons. I don't feel sleepy- just not able to keep standing up. So I sit down and sleep takes iver.

[gamechanger_tobesure]

I had GCA diagnosed last September and started on 50mgs. I had terrible insomnia and would wake about 2 hours after going to sleep. I felt like I did 43 years ago with my first baby!

I tried aroma therapy, relaxing noise apps and relaxation techniques which worked sometimes and not at other times. I also used repeating a very simple mantra or word that would fill my head rather than the crazy conversation about multiple topics bouncing off the internal walls of my skull that would wake me up even more. If I could use my word and keep repeating it, 'sleeping', as soon as I woke I could sometimes avoid the craziness and get back to sleep. I would give myself 45 minutes of trying different techniques and if not successful I would get up.

This time of getting up I tried to make as pleasant as possible for myself and it became a ritual of self-care really. I tried to see it as a time for contemplation and solitude; the noises of the night are very different to the day and in a way quite comforting. I tried to let go of the worry about not sleeping and accept this awake time for what it was. I made a cup of comforting beverage (non caffeine). I created a space in the lounge where I would go - I had a small table covered with a lovely piece of fabric I bought especially for the purpose. I placed a beautiful candle on it which I would light. This was another gift I gave myself. I'd sit in the comfy lounge chair and read a book from the pile of 'must reads' I'd been gathering over the previous months and would settle into it. Once my eyes started to see double, I'd return to bed and was able to sleep till morning. I would usually be up for at least 3 hours.

So the pattern became sleep for 2 hours, up for three hours and then sleep for another 2 hours. I resisted sleeping during the day as I was afraid I would not go to sleep at all during the night. Some days, however, I hit a wall and slept for at least two hours. It did effect my sleep that night but there was no alternative. My sleep started to improve at about 20mg and by 15mg I was back to sleeping reasonably well through the night most of the time. I feel for you very much as sleep deprivation is so debilitating. It was definitely the worst part of this whole journey for me to this point and I felt so helpless during this time. I lost connection with the person I was as far as being able to multi task, hold stimulating conversations and prepare meals more interesting than meat and three vegs! Have hope that your sleep will improve and your life will start to look more familiar to you in the not too distant future! Be gentle with yourself.

[Horsewhisper in reply to gamechanger_tobesure]

I like your middle of the night ritual! Things have started to improve for me now that I have become more accepting of the sleep disturbance. I take regular afternoon naps to recharge and try not to be too hard on myself if housework hasnt been done or the ironing has piled up a bit. The energy that I do have I spend on productive things like baking, ice cream making and messing about with the kids - far more important and fun! Thanks for your reply.

[gamechanger_tobesure in reply to Horsewhisper]

Wonderful to hear that you have found those special things that give you joy and meaning! Enjoy! I reached a milestone today as I've tapered to single digits in my Pred dose! Yay!! Look forward to hearing from you from time to time. Take good care of yourself.

[1Unknown12]

Hi.

You may have got all the answers you need. All I can say is when I was on 60 and then 40 mg of prednisolone I only had 45 minutes sleep some nights on others anything from an hour to two. And the rest of the time I was wide awake.

My GP was sympathetic to the cause and put me on amitriptyline first 10mg for a week then up to 20mg. It worked for me. But we are all different. Like others have said take the prednisolone early in the morning before 7.30 am.

Take care.

A.

[Horsewhisper in reply to 1Unknown12]

Thank you - yes some very helpful answers and things have started to improve in the last couple of weeks, with a few adjustments here and there.