Sleep pattern worse on reducing doses than it was on higher doses

[Mary63]

I have been reducing from 10mg to 9.5mg on DSNS method since 1st December. Diagnosed PMR January 2016 and prescribed 20mg prednisolone then.

I used to have the odd bad night, waking early maybe 3 times a month, occasionally twice a week....all bearable. But I have this month only had one good night, and am waking most mornings at between 3 and 4am. I'm knackered, trying to get daytime nap when I can, but that is not often possible. I'm loathe to go to bed too early at night in case I wake even earlier.

Any ideas? Most people say that sleep improves as pred dose gets lower.

I have not yet had any return of PMR pain on reducing doses, though fatigue has been a problem even when getting enough sleep.

[SheffieldJane]

Amitriptyline 10 mgs before bed time has improved my sleep. I am at similar levels of Prednisalone to you and although pain doesn't bother me too much I sometimes feel plain uncomfortable and a bit wound up. I am better on the days I manage a gentle walk .

[Gillymar in reply to SheffieldJane]

I am on Amitriptyline and have been for several years. I now have a good nights sleep. I only take for that as I am not depressed.

[Mary63 in reply to Gillymar]

Thanks for your reply Gillymar. If there is no improvement in a week or so I will ask for some amitryptilene, though I really hate taking medication. Hey ho!

[Gillymar in reply to SheffieldJane]

I like amytripteline as it has improved my sleep. I also take luxedo powders either one or two nightly prescribed ages ago for lazy bowels. Does anyone know of an alternative as I do not enjoy the taste or texture of them.

[PMRpro Ambassador in reply to Gillymar]

Are you using them on a permanent basis? You shouldn't really use them for more than a couple of weeks - your bowels get used to them over time and you end up becoming dependent on them. A good alternative is lactulose - but be careful, it takes a few days to work at the dose they say and you mustn't increase it or you will end up in trouble!

Diet and drinking plenty of fluids are important to keep regular - but you don't need to "go" every day, there isn't anything wrong if you don't providing the stool is soft and easy to pass.

[Gillymar in reply to PMRpro]

That is most helpful. Thanks . I will investigate further.

[Mary63]

Thanks Sheffieldjane. I will consider requesting amitryptilene if it goes on much longer, though I did feel very doped in the daytime when I took it for depression when I was young.

It does seem weird to me though that as I reduce the pred dose sleep gets worse, though maybe it is the actual disease rather than the pred? Before diagnosis and treatment my sleep was rubbish, but I presumed at the time that was because severe pain woke me.

I am lucky that I can do more exercise than most, and manage to play a couple of sets of tennis twice a week, and gentle gym twice a week.

[SheffieldJane in reply to Mary63]

My GP told me Amitriptyline was a rubbish anti depressant but good at pain relief and inducing sleep. Could you be worrying about Christmas? There always seems a lot of expectation around it and quite a lot to do to continue failing the expectation I find.

I agree that PMR interferes with restful sleep, so you may be right that it's making itself felt a bit. I get up to go to the loo at least once annoyingly. I try to have a lie down in the day too and sometimes nod off, it seems to have no impact on my night sleeping.

I cannot imagine playing tennis again, good for you.

This whole disease is weird May it pass quickly.

[Brixhamhampster]

Mary63. I really sympathise with you over the lack of sleep and I am now on 7/6 using the slow method. I have had sleep deficiency for over ten years and it was much worse when I was first put on 20 mg prednisolone. However I am now sleeping better since I went below 8mg but I admit I do go to bed whenever I am tired whatever time it is. I always wake at 3.30am whether I go to bed at 9, 10 or 11. So guess what I go at 9! Just get the extra hour that way and it is so beneficial. Like you I have been lucky enough to be able to exercise and that also helps. I have read all the "rules" about sleep disciplines but I go with what works for me. Hopefully you will start to sleep better soon. Sleep is such a big part of our healing.

[Mary63]

Thank you so much Brixham Hampster for your kind reply. I hope that as I reduce things will improve. I have been trying not to go to bed too early as I seem to wake earlier, but maybe I need to sort out a way to get a daytime sleep. I have cut down from full time to half time ish in the last 4 months, but I work all different hours and cannot get into a pattern therefore. BUT I will try! Sounds like it's 9pm to bed for me...grab 4-5 hours if I can and catch up the next day whenever I can with a couple of hours.

Thanks again

Mary

[PMRpro Ambassador in reply to Mary63]

I never had sleep problems even on higher doses of pred - but I DO have periods of waking at about 3 or 4 am. It goes on for a week or so and then, as suddenly as it started, it stops!

If you can plan one I think a daytime rest may well help. I'm sure she'll be along to mention it but HeronNS had sleep problems until she started taking her calcium supplement with a snack at bedtime - since then, sleeps far better!

I have always gone to bed early with PMR - before pred I was in bed at 9pm at the latest and dragged myself out at 9am still exhausted! I'm still am ready for bed most nights at 10pm but at least the only reason to want to stay in bed in the morning is that it is cold outside! Minus 8C this morning...

[Mary63]

Calcium and a snack tonight then! I will give it a go....Thanks again PMRpro!

[PMRpro Ambassador in reply to Mary63]

It's always worth a try!

Sure it isn't you are getting all excited about Santa????????

[Mary63 in reply to PMRpro]

Excited about Santa?? Actually not really! And rather well organised for once! Suppose I am a bit concerned about ensuring I can manage to pace myself adequately, as our house is the hub of Christmas for the duration. But my husband and (adult) kids actively encourage me to stop working so I'm lucky there...

Thanks for all your help PMRpro. Your advice is so fantastic, your knowledge immense, and your little snippets of humour very welcome. Have a lovely Christmas!

[PMRpro Ambassador in reply to Mary63]

Thank you

[Hidden]

I also take Amitriptyline, I started on 10mg and that is no where near the therapeutic dose for depression.

I was very reluctant to take it at first but having been convinced by Colleague to take it, l did!

The Colleague was a Psychiatrist, he explained it was an old long established medication that was now rarely used in the treatment of depression but had good results for people with chronic pain. I'm currently on 30mg & the trick is make sure you've taken it by 8pm as then you sleep off any side effects! 😴

[Mary63]

Thanks very much Mrs Nails. Strangely I slept 6 hours last night. I put it down to taking the calcium tabs at night as suggested by HeronNS but we shall see.

[nancyannehanson]

Perfect, while not happy for you....this is the same path I am following as I reduce the prednisone. Glad not to be alone. Having had so much energy, the fatigue is like a bummer. In it to win it.

[Mary63 in reply to nancyannehanson]

You're right. It's good to know that others have similar problems. Let's both hope to see improvement soon!