sleep

[dillydally1]

I seem to be asking so many questions because I am new to pmr. I have been a bad sleeper for many years. since the prednisolone it as got worse, is this quite common on prednisolone. I didn't get to sleep until 6am this morning. any ideas how to deal with this x

[DorsetLady PMRGCAuk volunteer]

Hi dillydally,

I had same problem when I first started on Pred. - normally I can sleep for England! You don't say what dose you are on, but usually the higher the dose the worse the problem. Fortunately my sleeplessness only lasted about three months, but it gets very draining whilst it goes on. I found that if I took a Nytol (GPs advice) about every fourth or fifth night I could get a really good sleep and managed to cope okay.

Don't start taking sleeping tablets every night though or that just another medicine to wean yourself off! Suggest you speak to your GP and/or pharmacist. Hope this helps, DorsetLady

[dillydally1 in reply to DorsetLady]

hi dorsetlady, thank you for your post, ive just reduced from 15 to 12.5, I do take amytryptyline at night for my neck pain (3 collapsed discs in my cervical spine), this used to help me sleep but not anymore. good to know your sleeplessness only lasted about 3 months, theres light at the end of the tunnel, thanks x

[PMRpro Ambassador]

My granddaughter can sleep for Scotland on 60mg pred - even in school - but it affects everyone differently and many people find it keeps them awake and a bit hyper.

Some people find taking the tablets last thing at night allows them a bit of sleep, as DorsetLady says, Nytol has been said to work for some. Try to rest any time you can - it doesn't matter if it is during the day - and don't worry about it or that makes it worse (I know, it's easy to say). One lady started a hobby and was up making cards at stupid o'clock!

As your dose reduces it should improve.

[dillydally1 in reply to PMRpro]

hi pmrpro, isn't it funny how each individual person reacts differently to medication. I don't feel hyper at all, in fact feel very fatigued, but cant sleep,

yes your right, I will rest at anytime, whether day or night, I think its more frustration than worry, I got a kindle white about 3 weeks ago, so this helps. x

[piglette]

I have never had problems sleeping, I would always go to sleep in seconds. However on starting pred at 20mg I would lie awake for hours, often until 6am. I would often revert to listening to the World Service in desperation which possibly was not a good idea as it got my mind active, but was something to do. I started pred in January and recently I seem to be sleeping much better, although I still have the odd night where I am still awake when the birds start singing. My rheumatologist said insomnia is quite common with people on pred.

[dillydally1 in reply to piglette]

hi piglette, what strength of pred are you on now. I used to watch the tele but resist that now and read instead. x

[piglette in reply to dillydally1]

I am on about 17.5mg trying to get to 15mg. I lie in bed and think about food!!! I do sometimes listen to iPlayer on my iPad as well. I don't think I could watch TV programmes though, as that would definitely get my brain into overdrive.

[mamma1027]

You are not alone dillydally1 - I have been on prednisolone for four weeks now, and roughly every other night I wake at around 2.00am and nod back off at around 6.00! I'm currently on 30mg (diagnosing doc probably set it too high tbh) and am having trouble every time I try to go down to 25mg - pain and stiffness return with a vengeance, but having read some of the other replies I am optimistic that when I do start to reduce, my hours awake will lessen. Oh the joys of pmr!! All the best to you xx

[dillydally1 in reply to mamma1027]

hi mamma 1027, lets keep our fingers crossed that we will be able to get some decent sleep soon. hope you manage to drop below 25mg soon. x

[mamma1027 in reply to dillydally1]

What has helped me immensely is finding this wonderful forum - being able to share my worries, ask questions, and just to have a bit of a moan to people in exactly the same boat as me is comforting. Doctors can give out the tablets, partners can support you, but only fellow sufferers can empathize with you. Bless you one and all xx

[dillydally1 in reply to mamma1027]

I totally agree with you mamma1027, x

[Badgergirl]

Ever since I've been on pred I've been having to get up 3 times nightly to pass water. Also, I get boiling hot and have night sweats. It is still like this after being on it for 6 months and now on 11 mg. I usually get to sleep finally at about 6 a.m. and sleep until 9.30. No wonder I'm a grumpy so-and-so most days!

[dillydally1]

hi badgergirl, yes I get night sweats but no problems with water works. you would think if were tired when we go to bed we would sleep. oh yes and I get grumpy to x

[Celtic PMRGCAuk volunteer]

I found avoiding coffee helped with the sweats. Meals with spices can also be a trigger. For the night time waterworks, no cuppas late in the evening may help.

[MJJ7960]

I had sleep problems, both before diagnosis with PMR and when I started prednisone last fall. Bleary-eyed, I stumbled on a 6-week web-based program called Go! To Sleep from the Cleveland Clinic. I worked my way through it and by Christmas was back to myself, at least as far as sleep is concerned. Lots of good suggestions, some of which are already mentioned here, a monitoring scheme and even MP3s for meditation. It does cost but was a small price to pay to have some virtual hand-holding to make it through a difficult time. I'm sure there are other equally good plans out there; this was one that worked for me and to which I still return when I have sleep challenges.