Steroid insomnia

40mg of prednisolone at the onset of my GCA gave me very little sleep so my GP prescribed sleeping tablets. Now nine months later I am still struggling with reducing the steroids and I am just about getting by with 15mg with the help of a daily pain relief tablet. I am wondering if I should try to wean myself off the sleeping tablets now.Has anyone else had similar problems? Incidentally I was diagnosed with PMR months after the onset of GCA and I can only conclude that when I was on the high dose of steroids it was holding the PMR at bay?

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  • Yes, Mike, the steroids would have masked PMR, I had a similar problem with asthma - the initial doses kept it quiet for about 10 months and then I wondered why I was feeling unwell again.

    I'm sure it's a good thing to wean yourself off sleeping tabs if you can, but I haven't had them so really can't advise. The only thing I am currently taking which is anywhere near is amitriptyline.

  • I imagine that yes, the high doses of pred masked the PMR since the normal starting dose for PMR-only patients is 15mg, exceptionally 20mg, and that should achieve 70% relief of symptoms within a couple of days - and that is at the outset.

    You say you are struggling with reducing the pred - at what rate are you trying to reduce? One of the major problems in reducing the pred dose is one of "steroid withdrawal" - and since the symptoms it causes are almost the same as a flare of the PMR it is difficult for the PMR patient to know which is which. You shouldn't be "just getting by with a pain relief tablet" if the problem is a PMR component - so I'd suggest it might be due to attempting reduction steps that are plain too big and it is causing trouble with steroid withdrawal.

    What was the last dose at which you felt well and pretty much pain-free? And what steps have you been reducing in? I take 5 weeks to go from old dose to old dose minus 1mg - I can't go from one dose to the next overnight even with 1mg steps but I do reduce using this plan on an almost constant basis: I finish one reduction and almost immediately start on the next. At present I'm resting at 5mg for a few months. A consultant rheumy has tried it - he sees it has worked in the patients he has used it for so far.

    We believe that such an apparently slow reduction actually works out faster - and far less stressful than the standard versions.

  • And PS (as I forgot) weaning yourself off the sleeping tablets will very much depend what they are. Ask your GP. My husband achieves good sleep with a quarter of a pill - maybe try cutting it down that way rather than trying to go without. Chemists sell pill cutters.

  • hI PMRpro, I have been keeping a chart of my prednisolone doses and it has taken me about three months to get from 15mg down to 10mg but then I hit yet another flair up so I am trying to get by on 15mg at the moment and although I do still have some leg and hip pains (not as bad as it was) I am not willing to go up to 20 mg as it will be such a struggle to get back to 10 mg again. However I still remain cheerful but fed up with people telling me a look well owing to the steroids

  • I too had terrible insomnia on high doses of Pred. I actually went bonkers for a month or two. Once I got below 30 my sleep pattern went back to normal so in my experience you could expect that too. Your only problem will be weaning yourself off your sleeping pills but it will be worth it - one less pill to count! Good luck

  • Thanks how long were you on them for? And how long did it take you to wean yourself off them?

  • Classicmike, I have struggled with sleeplessness throughout my PMR journey. Sometimes, sweetened warm milk and a piece of toast help recall sleep. Other times, I just accept my topsy turvy sleep pattern and get out of bed to read for a bit. Eventually, I get cold and the warm bed helps me go back to sleep. Personally, I have avoided sleeper pills, assuming that steroids cause a reduced need for sleep, and thus I will sleep less. Short (1 hour) Afternoon naps fill in the gaps.

    Hope these thoughts help you in some way. Just accepting some of the changes allows me to move forward.

    Also keeps me from stressing about yet another thing.

    P. S. I'm writing this at 5:45 am and have been awake since 4am.

  • ive found amytripyle helps me sleep and dulls neuropathy.We are all different hope I may have helped.

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