Long nights

I am so pleased to be taking prednisilone; I realise the short term and long term effects and the need to reduce the dosage quickly and to taper off the dosage etc.

Short term the benefits have been amazing, with the initial shock of a 90mg daily dose providing me with a similar toxic shock effect each morning as drinking about half a bottle of spirits to address my thirst following running a marathon. Remarkably, my body has reconciled itself to this situation and each morning after taking my drugs, the period of malaise has reduced. The one thing that hasn’t changed though is shortage of sleep. Over the past 9 days I have settled into three sleep sessions per night, longest lasting 2+ hours, sometimes waking, then returning to sleep promptly, sometimes requiring a short spell awake - overall about 5 hours sleep and 7 hours rest. Tonight/morning is different! 2+ hours and wide awake; as I type.

I am confident that I am not the first to be experiencing this form of sleep disruption and understanding that we all metabolise these drugs at a different pace, has anyone had any success in trying to accrue sleep through the day? I have tried to grab a nap mid afternoon, but not a chance. I take my drug in one hit, with breakfast: as recommended by my pharmacist, who assured me that this was the best time in terms of sleep regulation. This is the worst night so far, no sense at all of tiredness, however wide awake and having made myself comfortable life is so much better than being kept awake by pain.

So if you have reached this far, indeed have stayed awake! Has anyone had any success with alternatives to sleep e.g meditation/mindfulness (a first for me) relaxation such as yoga? Apart from the obvious issue that we need to sleep, rest is also important to combat the symptoms of this disease and whilst I am resting now physically, my brain and consciousness is very much in gear.

[OldGolfer]

Sorry man. I think I have adapted to this problem by realizing I have more time than ever in my life to relax. I’m only on 20mg for PMR so it’s different I know. If I can’t sleep there’s always tomorrow to at least rest. It’s amazing to me that I actually welcome the slowdown in life that this has necessitated. I’m awake right now ( midnight Virginia Time) with a cup of coffee and my faithful Dalmatian by my side and really don’t care about tomorrow. Fortunately stimulants have the opposite of normal for me because of hyperactivity problems, it calms me down and puts me to sleep. I’ve been reading your posts and your lifestyle likely makes this harder for you. I’ve settled into the fact that my life has changed and the only solution for me is acceptance. I wish you the best and hope you get some rest tonight.

[Hidden in reply to OldGolfer]

Thanks. It is just a very acute phase, following an undiagnosed chronic spell. It’s 5:00 a.m. here and akin to you, I have an empty decaf coffee cup beside me and whilst my border collie is a few feet away, he keeps a watchful eye on me through the night.

Just got to come to terms with it. I feel totally chilled about the situation, partly drug induced, but no pain helps. I could request sleep medication, but with 4 additional drugs as part of the medication package to combat the side and long term effects of steroids, I wouldn’t welcome another one.

Must take the positives out of this pain free, supported at home, feel the most relaxed in years and taking in the simpler things in life, like coffee with a friend later today.

Hope that you get some rest too.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I agree you don’t want sleep medication per se, but I found that if I took one otc (over the counter) sleeping aid about every 4th or 5th night, then that got me through - as advised by GP.

Actually once you comes to terms with unsettled sleep (and hopefully only temporarily whilst on higher doses) it’s surprising how productive you can be - without being to vigorous. Of course, as we’ve all had a spell of being ‘at home’ most of the boring, ‘I’ll do it tomorrow’ jobs have been completed!

[Hidden in reply to DorsetLady]

Thanks, good idea and one to try.

[Lee1945 in reply to OldGolfer]

Have you tried taking Magnesium Glycinate two hours before you retire to bed? It may be worth giving it a try.

Apparently we are all short of Magnesium so it will help your bones if it doesn't improve yoye sleep!

[Hidden in reply to Lee1945]

Sorry missed your post. Very early days. Just coming to the end of my 12th day. Will look it up.

[Arflane97G]

I used to find it really hard to have an afternoon nap no matter how tired I was but I tried some meditation sessions on YouTube and they really worked and now I can nap for an hour or so most days no problem! I retire to my bedroom, close the door, pull the blinds down and I am away.

[piglette]

I just listen to the BBC World Service. I have learnt all sorts of fascinating things. It is frustrating not being able to get to sleep though, I used to shut my eyes and be asleep in about seven seconds before steroids!

[PMRpro Ambassador]

"I have tried to grab a nap mid afternoon"

I doubt that would work - you sound as if you are rushing at it. You will do better planning a specific time and not worrying about whether you actually sleep or not - even the rest is a benefit. You have a serious systemic illness that is still very active under the pred - you need to bear that in mind and try to avoid doing too much to physically tire you out for the moment.

It will get better but you are going to be a on high dose of pred for some time to come. Some people use OTC sleep aids - you have to experiment a bit to identify how and which works for you. Sometimes GPs will help with something a bit stronger but not for daily use, just occasional to break the pattern a bit.

[Hidden in reply to PMRpro]

Sound advice.

[SnazzyD]

I just saw an awful lot of sunsets and had multiple mini-naps. Not a lot you can do about it at these dose levels; it just becomes a temporary way of life. Pred used to make me feel initially drunk and uncoordinated for a few hours and I know others have too. For that reason I took it to coincide with bed time so I slept through the worst because it was like a sleeping pill in that regard so I got a few hours. However, once in my system later I would wake very early and that was that, no different to anyone else. It is par for the course really and you just have to live a weird kinda life, until the dose reduces. Be very aware that even if at times you feel sharp as a razor and full of vim, don’t think you’re functioning ok, and be very wary of driving.

You mentioned other drugs. Have you had a DEXA scan for a baseline bone density level? One of the drugs I suspect is for your bones and isn’t without its long term issues, but docs do seem to like to hand it out just in case. Many of us have found that we didn’t need bone meds because our scan meant it was ok to just take vitaminD and Calcium.

[Hidden in reply to SnazzyD]

Thanks. Taking vit d and calcium, combined with additional drugs for bones. I might see about slowly moving my drugs on to evening evening might help. I suspect though that by the time I get them to evening, the dose will have reduced.

[SnazzyD in reply to Hidden]

I found that I didn’t get a good night until about 20mg, but it’s an individual thing. Choice about timing depends on how Pred effects you in the first few hours and the remaining hours. I wouldn’t suggest taking it in the evening if after an hour or two (assuming you’re on non-coated Pred) you’re raring to go without the dopey bit first. What dose are you on now?

[agingfeminist in reply to Hidden]

I was on 60mg for almost a month at the beginning of this year. I have always taken it late at night (after 10pm). I think my melatonin begins to kick in at around 9pm. I take the pred with plain yogurt and thawed frozen cherries. Anyway I have never had a sleep problem...which is surprising as I have been an insomniac my whole life!

I do have BBC world service on all night to lull me back to sleep if I do surface.

Tapering slowly and warily. Following the excellent advice received here.

I have been tremendously fortunate not to have lost a single day's work throughout all this...sometimes only half a day achieved. All online which helps.

BUT have almost zero physical energy...and that I have had to adjust to.

Hoping all goes well for you....

[Suffererc in reply to agingfeminist]

Are you saying BBC is boring 😂 Enuff to send to sleep

[agingfeminist in reply to Suffererc]

Absolutely not. I used to work for the World Service!

But there is something truly soporific about the human voice droning on in the middle of the night.

[Rugger in reply to Hidden]

If the "....additional drugs for bones." include a bisphosphonate, such as AA, you might search this site for discussions about it - that might help with your sleep!! Also, you may want to ask for a DEXA scan before deciding whether you need them. SnazzyD has mentioned this.

Apologies if this is not relevant.

I did quizzes and crosswords when I was awake on the higher doses - also knitting!

[Hidden]

90mg and likely to be on that for another 6 weeks

[Yellowbluebell]

Since starting pred in oct 18 ?I have nothing more that 4 hours but usually only get two with a couple of sleepless nights per week. Even if not working I can't sleep during the day. Absolutely shattered by 7pm but if I do sleep then I am awake 2 hours later and awake all night. Two hours seems to be my max. Yawn yawn🥱🥱

[Hidden]

sorry to hear that. Thanks for sharing

[Yellowbluebell in reply to Hidden]

I have with my house tried everything legal so far and I use herbal teas to help me relax. Even if they dont knock me out they do ensure I am at least relaxed. I stopped worrying about the lack of sleep and I still manage my very stressy at the moment job as a barrister but I do have to juggle what else I can actually stay awake for and try very hard not o tip myself into flare. I have a very understanding husband and some well trained staff who pre empt my loss of words. Napping doesn't really happen for me but it does for lots of others on here. I hope you can sort it a bit.

[Hidden in reply to Yellowbluebell]

Thanks. I am semi-retired, so not pressured, just feel hyper, yet bored and very mindful that rest is crucial to remain asymptotic.

[Daffodilia]

I use a lavender pillow spray - Tropic knocks me out and count any number 1 to 10 at different speeds over and over - also tense and relax all muscles from toes to head and do abdominal breathing - if you are not sleeping at least you are relaxing this way

[Hidden in reply to Daffodilia]

Thank you

[Hidden in reply to Daffodilia]

My wife practices as an aromatherapist and I have tried lavender oil. Perhaps the dosage I am taking of prednisilone just steam rollers it. I will persevere with the oil though as it does no harm and leaves a nice scent in the bedroom

[Yellowbluebell in reply to Hidden]

I use lavender sni trained as an aromatherapist and like you say it doesnt do any harm and I love the small and agin it helps me stress less about being awake.

[123-go in reply to Daffodilia]

That's good advice....works.

[Viv54]

Ditto !! first few days back on Pred for the second time , my brain was totally wired ! Got up at 4,30 that morning and went right the way through till 3 the following morning ! was more a less like that for a week ,falling asleep for maybe a couple of hours at a time if i was lucky ! I take Amitriptyline once a day for a problem i have with nerves in my feet. Used to take it in the morning now take it in the evening . It has helped with my sleep im getting at least 4 to 5 hours , to some may not be a lot , but as you know its bliss if you can get this amount . Hope this helps ! You could have a chat with your GP. Good luck , i really feel for you lack of sleep impacts so much on our everyday life.

[Hidden in reply to Viv54]

Thank you

[Louisa1840]

Insomnia is a problem whilst on pred but I think the main thing is not to worry about it. Accept it, turn on the radio (if not a problem for your partner if you don't sleep alone) and don't worry if you can't drift off. After all your body is resting....

I would rarely get more than five hours on a good night. BUT I am retired so I am lucky to be able to have a snooze after lunch usually around 2 p.m. I don't exactly sleep but my brain drifts off into another zone and I get up feeling refreshed.

Good luck with it all......

[Hidden in reply to Louisa1840]

Thank you. I average around 2 hours a night at the moment. I tend to get up and spend my time placing posts on sites like this 😀. I tend to wake, have a significant thirst, drink a very small amount, wake and nature intervene. From the variety of responses it appears that we each experience different reactions and have to learn to cope to suit our individual circumstance.

[PMRpro Ambassador in reply to Hidden]

Are you drinking enough to satisfy that thirst? And please get your doctor to check your blood sugars - pred can induce a form of diabetes and high blood sugar is high blood sugar, whatever the cause.

[Hidden in reply to PMRpro]

Thanks. I monitor the amount I am drinking - not obsessive, just more aware of monitoring myself holistically. Initially, the drugs made me quite subdued, so to ensure that I kept my fluids up, particularly as it has been very hot, I kept a note of how much I drank. Lots of water and bloods checked. As I am becoming more tolerant of the side effects of the steroids, I am becoming more relaxed, but ever conscious to keep my fluids up. Thanks for the reminder 😀

[Louisa1840]

You are so right when you say that we are all different. However, maybe the 'significant thirst" is worth mentioning to your doc? Pred (and I am only on 6 mgs currently) creates all sorts of bladder urgencies.........

[Hidden in reply to Louisa1840]

Indeed. Drink, drink again and again and nothing in return. 6 hours later, no stop. Side effect of cortico steroids. Worth it though when I hark back to what it was like as they treated me for sinusitis; unsuccessfully!

[Suffererc]

Have similar sleep problems but just put up with it. Have to have zap nap during the day when my body tells me, maybe only lasting 10 mins

[Hidden in reply to Suffererc]

Thanks. Will try

[123-go]

I agree with Arflane....mindfulness meditation works for me too. Nine times out of ten I'm asleep in short minutes. Another thing that has helped me on the one out of ten nights is turning on to my back, extraordinary for me as previously a committed side-sleeper.

The mm needs practise so if you do give it a try don't give up if it doesn't work first time.

[Hidden in reply to 123-go]

Confirmed what my charming wife suggested

[123-go]

Everyone should listen to their wife 😉. Now you have to try it and let us know how you get on.

[Hidden in reply to 123-go]

Just taken her out for lunch. Covid test tomorrow, then isolation for three day ahead of biopsy Friday. All go when you have CGA.

[123-go]

She will appreciate your thoughtfulness. Partners suffer in their own way when their loved one is sick. I put my husband at my beck and call for weeks and heard no complaining. He must have sworn under his breath more than once but I could never have managed without him. Hope all goes well at appointment.

[Hidden in reply to 123-go]

Thanks. Yes carers get forgotten, thankfully we have very supportive family and friends.