Waking up in the night : My partner has been on... - PMRGCAuk

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Waking up in the night

PMRZ profile image
PMRZ
64 Replies

My partner has been on prednisolone since last March and had reduced to 9 mg by November. Unfortunately, when he went for his Covid and flu vaccination, he picked up flu and was very ill so the doctor advised him to increase to 20 mg temporarily. He has gradually dropped back and is now on 10 mg with just small twinges now and then.

The problem is that he wakes up at 2 am most mornings and find it really difficult to get back to sleep. He takes his pred in the morning, but I remember reading about some people taking it at different times and I wonder if anyone has any advice. He runs his own business so gets up at 6 am normally, and losing that amount of sleep is not sustainable.

The problem is that he wakes up at 2 am most mornings and find it really difficult to get back to sleep. I remember reading about some people taking prednisolone at different times and I wonder if anyone has any advice. He runs his own business so gets up at 6 am normally, and losing that amount of sleep is not sustainable.

Any suggestions gratefully received!

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64 Replies
jinasc profile image
jinasc

2am in the morning to take your pred is when your adrenal glands would wake up and start to replenish your body for the next 24 hours . Some people find this works well. That does not mean it will work for your husband, but worth a try. Some people also find the splitting your dose works.

In the FAQ' read this link: healthunlocked.com/pmrgcauk...

Read it all and the last paragraph.

Jane424 profile image
Jane424 in reply to jinasc

It works well for me taking it at 2 am. Good luck

Pixix profile image
Pixix

I wake at 3am nearly every morning & have trouble getting any sleep after that. I take amitryptylline at night, around 7pm, & it relaxes the muscles & aids sleep, but doesn’t last..for me. I think it need to take it at 8pm & see if it lasts longer! However, I’m wakened by pain that doesn’t respond, & I was initially prescribed the amitryptylline to help fibromyalgia. I have sleeping tablets which I take once every 7 nights to try & catch up a bit! I’d advise asking your doctor, but if you want, sorry your partner wants, non drug help, then there’s Nytol or many other things. Have you searched on the subject on this forum, or looked to see if the subject is in FAQs? Theirs subject does come up a bit, so you should find suggestions there!

Jane424 profile image
Jane424 in reply to Pixix

My doctor prescribed 10 mg Zopiclone at night for sleep. With his permission, I split the dose and take 5 mg 1/2 an hour before going to sleep and 5 mg when I wake at 2 am, plus my prednisone. It works well.

Pixix profile image
Pixix in reply to Jane424

It’s Zopiclone that I take once a week, IF I need it. I’ve seen people get reliant on sleeping tablets & I'm keen not to go down that route! Interesting split, though…I still wake in order to take my pred between 2-3am even when I’ve taken Zopiclone…I think my inner clock is going to do that for the rest of my days! Think if I took 5mg of Zopiclone at that time I wouldn’t get up in the morning or be fit to drive, but im thinking of giving it a try!

Jane424 profile image
Jane424 in reply to Pixix

I wake up just after 6 OK, but am also on pain meds so don’t drive. Interesting that waking at around two has been historically recognized. In the Middle Ages, people used to get up and wander around and then go back to sleep. Burglary was a particularly popular activity.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jane424

Bet they weren’t suffering with PMR though😂🤣..too young, and definitely too agile!

Pixix profile image
Pixix in reply to Jane424

That’s interesting! Burglary of outbuildings is popular atm, but they didn’t have garages then!! LOL!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Maybe have a look at this -

healthunlocked.com/pmrgcauk...

SheffieldJane profile image
SheffieldJane

If it is any consolation these phases don’t last forever. Experiment with bedtimes and times for taking Pred as has been suggested. 2 am is a great time to take Pred for a good morning and to deal with the inflammatory substance as it arrives. This early morning waking can become a habit. Ban all electronic devices from the bedroom. Practise emptying the mind, ensure the bedroom is dark and comfortable. Relax the body in stages, from head , jaw, tongue, chest and downwards to the toes. My sleeping improved when I switched to gastric coated Pred. Whatever works for him. Good luck!

PMRpro profile image
PMRproAmbassador

As already mentioned - 2am is the ideal time to take pred so if he is awake anyway - he could try that and see if it makes any difference. There are lots of sleep-aids - both OTC and prescription which might achieve a longer sleep. But I suspect it has become a habit that needing breaking. Getting to sleep and staying asleep are different problems. Lots of advice to be found on the internet. And Snazzy has given you a start.

I often wake in the night and lie there for a couple of hours with my brain going like a washing machine. What I have found is that if I take my liquid magnesium supplement at bed time, I sleep much better. And others have found taking their calcium supplement before bed has a similar effect. It wasn't all old wives tales about hot milk before bed!

jinasc profile image
jinasc in reply to PMRpro

I have used Radio 4 for more years than I can remember...............low and the boring the better.

PMRpro profile image
PMRproAmbassador in reply to jinasc

Even a crack of light drives me nuts - even the red light on the TV is enough and the neighbour has a floodlight onto the carpark in front of the building which is on until midnight. I can block it out with the extenral blinds - but then I don't wake on time in the morning!

jinasc profile image
jinasc in reply to PMRpro

How different us humans are - I put a box in front to block the little red light.

However I never close curtains......I don't like the dark..........

How odd is that?

PMRpro profile image
PMRproAmbassador in reply to jinasc

I switch it off at the mains - saves the electricity for stand-by too! Must investigate the rest - all OH's maze of wires ...

jinasc profile image
jinasc in reply to PMRpro

You live in a warmer place than me - no switching off mains - too cold. Summer last two years were warmer so off with mains.

PMRpro profile image
PMRproAmbassador in reply to jinasc

No - just where it is plugged in. Get out of bed, flip the switch, head for the kitchen to switch the kettle on and back to bed to wait, switching the TV on on the way.

jinasc profile image
jinasc in reply to PMRpro

Ah I thought you meant the mains switch. Silly me 👍

PMRpro profile image
PMRproAmbassador in reply to jinasc

Nah - just the old-fashioned concept of switching things off before bed!

rh03ros profile image
rh03ros in reply to PMRpro

My sympathies PMRpro, trailing wires are my Room 101 item!! It would help if mobile/iPad charging leads were not made so long😂

PMRpro profile image
PMRproAmbassador in reply to rh03ros

Me too - and OH had a lot!!! I actually find my charging leads are quite short - but they have a place beside my bed and I charge things during the day so they aren't in the way. The room that was his study is immaculate now - no cables trailing from the computers, TV, speakers, wifi so it can be cleaned. VERY mixed feelings about it though ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Know where you are coming from 🌸

Koalajane profile image
Koalajane in reply to jinasc

I never close our bedroom curtains either

Rose54 profile image
Rose54 in reply to jinasc

No not odd I too hate sleeping with curtains closed so did my Mum

In not scared of the dark but like to wake up and be able to see around the room

FRnina profile image
FRnina in reply to PMRpro

soft padded silk sleep mask might do the trick

PMRpro profile image
PMRproAmbassador in reply to FRnina

Would drive me nuts!!!! As if I weren't already!

FRnina profile image
FRnina in reply to PMRpro

just pretend you're on a long haul flight?

PMRpro profile image
PMRproAmbassador in reply to FRnina

Don't wear a mask then! And they are as bad as nightmares ... ;)

Peptink profile image
Peptink in reply to FRnina

My daughter gave me one. I find it to work quite well. It’s soft and no light comes in at all. I love it. Didn’t think I’d be able to use it, so I’m pleasantly surprised.

FRnina profile image
FRnina in reply to Peptink

I didn't think I'd like mine either but it works like the proverbial dream.

Maudie19 profile image
Maudie19 in reply to PMRpro

So glad to hear you say this. My husband has never understood the need for NO light. Just close your eyes he says! Those little red lights have to be covered!!

PMRpro profile image
PMRproAmbassador in reply to Maudie19

Wonderful stuff duct tape ...

Constance13 profile image
Constance13 in reply to jinasc

😂😂😂

lkcreedon profile image
lkcreedon in reply to PMRpro

If you take a calcium supplement, can you also take the magnesium supplement? Is it necessary to take them apart or is it ok to take the mm one after the other. I too wake up round 3 am in some pain most nights and have issues trying to get back to sleep.

PMRpro profile image
PMRproAmbassador in reply to lkcreedon

Not sure - HeronNS may know though, she's good at supplements. I'm sure there are combined supplements with both in though

lkcreedon profile image
lkcreedon in reply to PMRpro

Tnx PMRpro

Blackcat1M profile image
Blackcat1M in reply to lkcreedon

I have started to take my magnesium two hours before bedtime as I have had problems with waking up at 2am,3am etc but, since I started two days ago I go to bed at 10.30 and wake up at 6 which,is better for me don’t know if it’s coincidence but anything’s worth a try.

lkcreedon profile image
lkcreedon in reply to Blackcat1M

That's just great Blackcat1M.

jinasc profile image
jinasc

🤔 😊 🤗 👍 🐅 It is my Chinese Year............

Poshdog profile image
Poshdog in reply to jinasc

Mine Too! Didn't get move sorted by my Birthdy, (August), so mentally reset to Christmas. Didn't manage that either! But partner now out of hosp, boxes all gone and I'm still in one piece, all by the Chinese New Year!

jinasc profile image
jinasc in reply to Poshdog

🐅 🐯 🐯 🐅 1938

Poshdog profile image
Poshdog in reply to jinasc

🐀supposed to be a rat - wouldn't you just know it?! 1948

jinasc profile image
jinasc in reply to Poshdog

Provided you were not born in Han or Feb 1948 your are an Earth Rat

Women born in the Rat year are the traditional women. They love keeping things organized and place great value on the family. Everything is taken care of by them and there is no need for their husband to worry. Outside of home, they’re also someone with a sense of responsibility and ability.

Born 1948 Element Metal 1948 or 2008

These Rats are good speakers. They’re the mood makers of a group, but can be slightly possessive. They face difficulties in their youth, but are generally able to withstand them.

So you must be nice to know. 🐯

Poshdog profile image
Poshdog in reply to jinasc

That is so lovely to know. It has given me quite a lift at a difficult time. Thank you, really appreciated. August is the month. Xx

PMRZ profile image
PMRZ

Thank you everyone for your suggestions.

Chewy21 profile image
Chewy21

I used to get the same trouble, I find a magnesium spray helps me to sleep. I just spray a little on each leg (used to be every day but now I just do it every few days) and now I sleep much better. I bought Better for you magnesium spray from amazon.

RockinghorseUK48 profile image
RockinghorseUK48

I have been taking Pred for about a year. I am currently tapering down an taking 7.00 mg per day. I take 5mg in the morning and 2mg 12 hours later at night. Most advise was to take the daily dose at once but this did not seem logical as your metabolism was in action 24/7. So after consulting my GP I split the dose.

Sleep patterns were the driving force and the change definitely helped.

My sleep patterns have not entirely returned to normal but they are better.

Everyone is different in how they manage the illness and the medication. Perhaps splitting the Pred medication may help?

PMRpro profile image
PMRproAmbassador in reply to RockinghorseUK48

Doesn't have much to do with 24/7 metabolism - the anti-inflammatory effect of pred lasts 12-36 hours but all pred has been metabolised and excreted in well under 24 hours. That is the reason pred is used as a medium acting antiinflammatory rather than hydrocortisone which is weaker and excreted faster so designated short acting and requires dosing 3x daily to manage inflammation or dexamethasone which is long acting so the effect lasts for days. It us also very difficult to taper the dose as it is stronger and 1.5mg is equivalent to 10mg pred

However - where the antiinflammatory effect doesn't last the full 24 hours splitting can help a lot. The disadvantage of taking the second part of the dose shortly before midnight is that it will suppress return of adrenal function, Often it doesn't need to be 12 hours later - some people find taking it at lunchtime is late enough. 2am is the ideal time to take pred - for all aspects, improving morning symptoms and assuring the lowest possible level in the blood at midnight.

196_ profile image
196_

I find it difficult to sleep on Pred. I frequently wake and am regularly get up at 4.30 am

Abcd123455 profile image
Abcd123455

I was really struggling with getting back to sleep and also asked the group for ideas. I realised that I was getting worked up, worrying about the fact I couldn’t sleep which was making things worse. I was worrying before going to bed that I would have a bad night. Now I stay in bed ( mostly) and try to think of something nice/ breathe slowly and tell myself it doesn’t matter if I’m awake a bit. Generally it helps me to go back to sleep. I do wake several times too, toilet, painful back etc- won’t bore everyone with that but it really has helped me to feel less stressed and fall asleep again. Sometimes it takes a bit longer but maybe get him to try some relaxation techniques in the day that he can use at night. Also for really bad nights good headphones and music or audio book, I fall asleep with that now too. I didn’t need to swap the time I take meds and didn’t try anything like nytol etc. Hope one or more group suggestions help 🌼

jackswife profile image
jackswife

I was always a great sleeper until prednisone. Since taking it, I struggled with getting back to sleep the many times I awoke each night. Now I use THC edibles, which work great! It takes a little experimenting to find the right dose that works but doesn't make you stoned. For me that's around 15 mg, for my husband it's around 5 mg. Every body is different, of course. I am lucky to live in a state that makes purchasing medical marijuana (and recreational now, too) legal and easy. Pricey though :)

danali1 profile image
danali1

Hi to be honest i never slept at all on 20 without the help of other drugs. Oh, and when I was on 12 and half is when I started sleeping better. then when i was on 7 1/2 i could sleep. I feel anything over 7/=1/2 is difficult

PMRCanada profile image
PMRCanada

I’ve used ear plugs for years, starting when I developed PTSD from work which lead to anxiety, sleep disturbances (night terrors), and a feeling of constantly being on high alert. Having quiet without sound distractions worked wonderfully. I tried Zopliclone but didn’t want to become dependant (like my mom and aunt). Also I never knew when I was going to have a nightmare, and taking a sleeping pill in the middle of the night left me groggy in the morning.

Now I also consume an indica dominant strain of cannabis before bedtime. Works a charm (and sativa strains helped with poor moods when I was at higher doses of pred). Recreational use is legal in Canada, but may not be where you are. Edibles are also an option if smoking/vaping is to be avoided. Not for everyone, and should consult with a physician before trying as it can have negative side effects for some folks with existing mental health issues.

Sure hope he gets some rest!! Nothing worse than sleep deprivation…I remember well from being a new mom. We need our rest.

HeronNS profile image
HeronNS

He could try going to bed a little later. And I've always found some outdoor activity, even a fairly short time, every day is helpful. Also there are things which encourage sleep, not necessarily medications, which should be a last resort, I think. I found by accident that taking one of my calcium doses (about 300 mg calcium citrate) near bedtime actually has dealt with my intermittent lifelong insomnia. Best is taking it about half an hour before time to lie down to go to sleep, with a small snack (usually a little plain yoghurt or small glass of kefir).

Sharitone profile image
Sharitone in reply to HeronNS

Is the snack necessary because the calcium needs some fat to be absorbed? And do you happen to know how it helps with the sleeping?

PMRpro profile image
PMRproAmbassador in reply to Sharitone

medicalnewstoday.com/releas...

it is in reasonably simple language ...

Sharitone profile image
Sharitone in reply to PMRpro

Thank you. And for noticing that I need it simple!🤣

PMRpro profile image
PMRproAmbassador in reply to Sharitone

I've workedin the field all my life - some of the stuff I find makes MY head hurt! So I don't bother putting it here :)

HeronNS profile image
HeronNS in reply to Sharitone

I find calcium can be a bit hard on the stomach unless taken with a bit of food, not just water. I don't even take calcium carbonate which is allegedly the worst. Also, as PMRpro's link suggests, a bit of dairy can serve a double, actually triple, purpose: line the stomach and also provide not only a bit of a boost for promoting sleep, but also help with absorbing the calcium so your body gets the best benefit from it.

Sharitone profile image
Sharitone in reply to HeronNS

Thanks, I'll try it.🙂

Sharitone profile image
Sharitone in reply to HeronNS

Thanks for that tip: I've now managed to reduce the sleeping tablet dose a little more because of it!😀

Greytree profile image
Greytree

Great chain here! From left field... I was waking up through the night before I had PMR and was on Prednisone. The New York Times has had articles about people of all ages having problems with this middle of the night waking (not people on Prednisone). The suggestions are some of those here. Read or listen to a boring book. Get up and do things til you're sleepy. A small amount of warm milk/almond milk. Tai chi before bed. Breathing exercises. I'm having this sleep problem still, continuing since I was diagnosed and started Pred in the fall. So far I'm sticking to the home remedies and avoiding med changes/additional meds. Just seemed like the path of least resistance. Some nights are better than others.

Mazwendy profile image
Mazwendy

Hi I had to go up higher on my preds but then started to taper down i would wake appx 2.30-3am at first I thought it was just taking the preds but then i realised I was waking because I was achy hurtingI adjusted the times of taking my preds and I started this on 10mgs so in the morning I took 3 non coated 1mgs pred along with a

2.5mgs coated preds as I read on here the coated get into your system later than the uncoated, I then would take a coated 5mgs pred at bedtime and after a week I was sleeping through to 6.30am.

I am still doing this I spoke to my rhumy and she said she was happy with this but that I taper down slowly 0.5mgs and do this 4 weekly with going down and I will have to cut a 1mgs tablet in half every other 4 weeks.

I hope this might be helpful although these things don't work for everyone.

But I feel I am getting my steroids throughout the day and it is keeping my aching at bay.

Johnnox profile image
Johnnox

Same same. 1.30 to 2am is my wakeup time. I rely on good sleep hygiene including getting up after about 20 minutes to have a cuppa or do something boring for a bit. Though recently I've been using Mindfulness Meditation and this kicks in the sleep cycle again. Unconsciously. Being mindful is the awareness that, arises from paying attention, on purpose, in the present moment, non-judgmentally. Releases you from that mindless chatter which often occupies the mind in those hours. Storm of thoughts; waterfalls of ideas; Not appropriate for that time of day. Focus on your breathing if you can. If interested, try Jon Kabat Zinn on YouTube. Emeritus Professor of Medicine and all round good guy.

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