TROUBLE SLEEPING

[SVLady]

I was diagnosed with PMR in July 2024 and am taking 12.5 mg prednisone as well as Kevzara. I have always been a poor sleeper but the steroids have made it even harder. The typical solutions such as Unisom, Tylenol PM, Melatonin etc just amp me up more. I occasionally take an Ambien just to sleep a normal number of hours but obviously cannot use that on a regular basis. I have been to see a sleep specialist and he said I am doing all the things he would suggest like no screen time before bed, limit or no alcohol, dark/cool room, ear plugs or white noise etc. Do any of you have other suggestions that I can try. Sleeping 4 or less hours a night is not good as I try to taper down my steroid dose and I can feel it taking a toll. Thank you so much for your help.

[SnazzyD]

I found I had to stop worrying about 8 hours solid a night and exist on naps in the day until the dose dropped enough so as not to be so disruptive. Some people have taken Amitriptyline from their doctor quote successfully but they just make me feel vile.

[DorsetLady PMRGCAuk volunteer]

Unfortunately it’s a very common side effect of Pred - and there are plenty of related posts - and this from the FAQs

healthunlocked.com/pmrgcauk...

[SVLady in reply to DorsetLady]

Thank you for the link. It was very helpful.

[piglette]

I always used to be able to go to sleep in seconds. When I started on the steroids it was more like hours. I discovered the BBC World Service which compensated me a bit.

[random901]

Hi SVLady! Like SnazzyD, I've stopped worrying about my unpredictable sleep patterns. I don't want to take any more medication, and amitriptyline just makes me peculiar. It's just me and faithful hound here, so I can please myself and nap any time in the day - usually after lunch, but sometimes before. I think you just have to be flexible.

[LemonZest11]

My Rheumy prescribed amitreptyline but it didn't work for me. That was years ago now, but just recently my new Rheumy suggested phenergan and voile! It's over the counter medication and I also wake up without the usual runny nose (hayfever).

[Getmoving4 in reply to LemonZest11]

Have just looked this up as my sleep is about 4 hrs per night. Would be careful about using this - see link from NHS nhs.uk/medicines/promethazine/

[LemonZest11 in reply to Getmoving4]

Nothing there that's frightening compared to any other medication. Recommended by my Rheumatologist but as always, check with yours beforehand.

[Getmoving4 in reply to LemonZest11]

Yes true, but not keen on the mention of fits seizures & unconsciousness. But guess that's if take to much or for too long. Mind you the common mild side effects are not so good of headaches, nightmares, dizziness & feeling confused.

[LemonZest11 in reply to Getmoving4]

Haha, have you read the side effects of pred? 😱🫣

[Getmoving4 in reply to LemonZest11]

Oh yes 😱 quite terrifying but one can only hope for survival through PMR without stroke, diabetes, serious infection from compromised immune system, blindness, weight increase, moon face, tiredness etc etc. And at least one gets a reduction of the excruciating pain 😅 Just don't want to add to these delights 😊 & will take up power naps for now. Oh yes and of course not forgetting the jollies of osteoporosis😉

[PMRpro Ambassador in reply to LemonZest11]

Or even paracetamol or ibuprofen ...

[Japsquar]

sympathise! Also, can only sleep on my back (rib problems) which makes it worse. I read and then sleep still propped up, usually gives me an hour or two. Last resort is playing music - sometimes plainsong or cello but most reliably my Beatles playlist! Can you find the equivalent? Good luck. I too take a pill now and then but they are rationed. And nap during the day which was once unheard of!

[AtopicGuy]

I listen to podcasts that really interest me, so I enjoy being awake. Then I enjoy waking up hours after dozing off. I restart the podcast from the last bit I remember. Sometimes it takes me more than one night to finish an hour-long episode.

[Bcol]

As already mentioned by SnazzyD, I found many many years ago when my OA started to be really grumpy that the best thing was to stop worrying about it and accept that what you always considered as normal now had to change. If I can't sleep rather than continually tossing and turning in bed and getting increasingly grumpy and stressed about it, I get up, have a hot drink, hot chocolate or horlicks possibly, read a book and/or listen to the radio. I also, nowadays, have a very comfortable recliner chair that I find very comfortable and easy to sleep in, I can adjust it to the shape that stops the various bits of my body aching/hurting when lying flat in bed. Guess one of those beds which can be similarly adjusted would probably also work. Listening to the radio helps to turn yourmind/brain off and so you don't spend the whole night thinking about things. Main thing though is stop worrying about it, accept that for the moment things will be different.

[Merrybell11]

To the lady who has trouble sleeping. The most important thing I found was to take your preds as early in the morning as possible. But taking it on an empty stomach is good. So I took some cereal or yoghurt before I took them. I never had problems sleeping even on 15mg although I know many take a lot more preds than that. Good luck.🤗

[PMRpro Ambassador]

Sleeping through the night is a relatively recent concept - historically people went to bed at dusk, may have got up during the night and then went back to bed in line with their diurnal rhythms. Cat-napping is a useful habit to cultivate.