When will my insomnia get better? I am on 35mg Pr... - PMRGCAuk

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When will my insomnia get better? I am on 35mg Prednisolone for GCA, slowly reducing. Hard to get even 5 hours sleep, tired!

allotment-lover profile image
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allotment-lover
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Hello. I hope you got a little more sleep!

I know exactly how you must be feeling, and for me it did get better, never thought it would. I started on 60mg pred, but it took until I got down to 10mg before I have started to sleep, although still having restless nights, and the odd night where I am watching rubbish tv, reading or on my laptop in the middle of the night for 2/3 hours in the middle of the night.

How much longer are you going to be on 30mg for - have you got a reducing programme?

It does get better - really!

Hazel x

Celtic profile image
CelticPMRGCAuk volunteer

Allotment-lover

I do empathise with the lack of sleep. I started on 40mgs and was in and out of sleep for most of the night. We are often advised to get up and have a walk around during sleepless nights, but I tried to resist the urge thinking, rightly or wrongly, that I might set myself up for permanent insomnia in the future. The good news is that it does get better once you reach the lower doses - meanwhile I do hope you are in a position where you can catnap during the day to make up for the loss of sleep.

janimaths profile image
janimaths in reply to Celtic

My daughter advised me to clear the bedroom of TV, ipad and radio so that my brain doesn't anticipate 'goodies' in the shape of repeat programmes or the world service. Only one book allowed. (I'd never thought of this before) I also keep one pink lady apple on the bedside table which keeps me from giving in to the steroid hunger and going downstairs for buttered toast.. I do sleep much better without the TV and ipad which carries the Guardian to tempt me. A book which demands close reading attention is good, if sometimes boring, and sends me off in about 4 pages. Sometimes not, but this regime has helped. Reminds me of the Beatles song: " All we are say-ing, is give sleep a chance". Sleep tight.

allotment-lover profile image
allotment-lover

tHANK YOU SO MUCH TO THE PEOPLE WHO AASNWERED MY QUERY ABOUT SLEEP. i am REDUCING THE STEROIDS, DOWN ANOTHER 5MG TOMORROW. I Have to get up, feel so buzzy cannot lie still and I start to think about useful and enjoyable jobs to do! On the plus side, my house has never been so tidy! On 50mg I could not cat nap but now I can a bit so that does help.

sara4 profile image
sara4

When I started on 40mg for gca I was so buzzy at night I was going crazy with tiredness in the day, so my gp prescribed zoplicone sleeping tablets. They gave me about 4 hours deep sleep at the most but even that was a huge relief. Only took them for about a month, and now I am down to 5 mg (16 months down the line) and have really lovely sleeps again.

It really is just the pred, and will get better but no harm at all in asking your doctor to help in the short term.

Allotment lover,

I have also suffered from lack of sleep since I was put on 30mg of pred 22 months ago. Recently I have found a good way of fighting insomnia ----- knitting. Quite a few members of my family wiil be receiving lovely, hand knitted scarves for Christmas.

After my exhausted partner has retired to well earned rest at night, I pour myself a large glass of "red" and resume my latest project. Just plain knit mind you. Nothing that taxes the brain. But one has to concentrate - no drops. It empties the brain and winds down the whole body. An hour or so after starting I go to bed and "bingo" I fall asleep like a baby.

I know it's hard to sleep on the high doses, but pred still interfers on the lower ones too. After all, it's pure adrenalin.

If all the home grown tricks don't work then my advice is, go to the docs and get something to knock you out. Being tired out will not aid your recovery. And tiredness will make the baddies much worse.

Pats.

allotment-lover profile image
allotment-lover

Is that what the steroids do? Give you pure adrenaline? I am still puzzled how they work and would like to know. I am taking Zopiclone but my GP is not keen and trying to get me to reduce/ stop. Currently I take half a 7.5mg tablet. It gets me off to sleep but I wake a couple of hours later . Then after two hours I may get off for another hour. I am surviving, but rather short tempered. Am looking forward to a day when I don't have to apologise to my husband!

Narducci profile image
Narducci

I started on a dose of 40mg prednisolone for GCA, and have over several months reduced to a maintenance dose of 12. 1/2 mg. Before that, I had trouble sleeping and the steroids have definitely made that insomnia worse. They do keep you 'pumped up'.

I have found that taking melatonin (3mg) with added zinc and selenium is helping tremendously. It has so many benefits. Google it and see. I would recommend it to anyone who has problems sleeping, but it also is good for so many other things.

My sister has GCA and was diagnosed about 15 years ago, way before me, and had 7 years of steroid medication, but these days, they can treat you over a much shorter space of time, thank goodness. Only someone who has this condition and who is having to take prednisolone knows what it is like.......hang in there..it will get better!

Allotment Lover,

35mg of pred is quite a hefty dose. I have just googled Zopiclone and it seems it's not always effective at keeping people asleep at the dose you are taking. Once you've been on steroids for approx 3 weeks at a high dose your adrenals shut down, but the adrenalin you have lost has been replaced by a much more powerful form, corticosteroids, which knock out the inflammation and often make you feel really "hyped up". When I was on 30mg I could hear my heart pounding in my head and was prescribed BP pills to control my hypertension. I too could only manage about 5 hours sleep a night, if I was lucky, but the thing to do is accept this and stop worrying. Take rests during the day if you can. Things will improve as the pred is reduced. You may be having quite spectacular dreams. Mine were pretty awful, but I was so glad that the pain was gone I thought it a small price to pay. My partner had to put up with some pretty odd behaviour from me at the time, but he read up on the side effects of steroids and took it all on the chin, bless him.

After a year, I am now on 10mg and struggling to get down further, but I'm more like my old self and sleeping pretty well. I find that the more I do physically the easier I sleep. Walking is good and being out in the fresh air releases tension. Do try, if you can, even though you're tired.

Pats.