4.00 am waking

[Sibelius5]

in a reply two days ago PMRpro said: A new batch of inflammatory substances is shed in the body every morning at about 4-4.30am. Does that explain why I wake at that time and find I can’t get back to sleep with feelings of anxiety, feeling overheated, overactive thoughts etc? is this common? And might changing the timing of my pred dose help? I currently take it in one dose after breakfast around 8.00 am-ish. My profile is up to date I think - my doctor agreed to keep me on 8 mg yesterday as I’m having niggly aches first thing after five weeks on that dose.

[DorsetLady PMRGCAuk volunteer]

Could well be - and a bit of info in first link you haven’t already seen - but might also be adrenals beginning to stutter and having to think about working again if it’s new occurrence - see second link -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[SnazzyD]

It might be that your cortisol level is quite low. By that time your Pred has all but gone and naturally your adrenal axis is using the early hours to start making cortisol for the morning. This is triggered by the normal low after midnight which is what you want. Over 10mg your body is so swamped by the Pred that the production of your natural steroid ceases. Under 10mg you need to start making your own and in more and more quantities as you reduce. If you take your Pred later to reduce those feelings it won’t help re-establish the cortisol production triggered by that low at night. You may find it gets worse before it gets better.

I wonder if one feels so crummy because not only is the cortisol level low but the inflammatory substances are up too. I also wonder sometimes if the increase in inflammatory substances occurs because our cortisol is low then. Perhaps that is too simplistic.

[PMRpro Ambassador]

I used to wake and could FEEL them starting their work!! Lasted a while and then subsided. I have been using a form of pred that you take at 10pm, it releases at 2am and the inflammation never gets to even start. Sometimes I was late taking the tablets - and felt the inflammation starting!!

[Sibelius5 in reply to PMRpro]

Is there a name for that form of pred?

[PMRpro Ambassador in reply to Sibelius5]

In Europe it is Lodotra, in the USA Rayos but while it is just more expensive in Europe at 27 euros for 30 tablets whatever the dose, in the USA it is ridiculously expensive, hundreds if not thousands of dollar for some bizarre reason.

[Thiago1396 in reply to PMRpro]

as I am now down to 7.5mg from yesterday, with adrenal issues expected soon, I am interested in what may help. Looking up Lodotra I came upon this:

endocrine-abstracts.org/ea/...

[PMRpro Ambassador in reply to Thiago1396]

Not taking it for adrenal insufficiency. It wasn't developed for that - it was specifically developed for use to reduce morning stiffness in rheumatology patients.

But that is hardly the biggest of studies is it? A large study would be required to see if a lot of patients don't absorb it and I would suspect there is something else going on.

[Pollyone]

Interested to hear about the 4am waking as it has happened to me for some time especially at the beginning of taking Prednisolone 4 months ago along with vivid dreams. Just accepting it’s one of the ‘joys’ of the med. I rushed up to London the other day and had forgot to take my steroids, I reasoned I would take it when I got home and 8 hours late. I’ve been moving it forward ever since daily to get back to breakfast time. On 8.5 currently so waiting to see how I get on moving down, still have some aches and Bursitis may be causing that too but trying to get off the steroids as soon as possible without going into a flare. Moving down each time causes a bit of reaction and subsides a bit over a few days. Unfortunately lack of GP support means I’m using these pages for advice and info.

[PMRpro Ambassador in reply to Pollyone]

You really didn't need to move the time back slowly - just a single day having forgotten isn't an uncommon event, you take it as soon as you remember and go back to normal times the next day. And put a pack of pred in your handbag so you always have some - I don't leave the house without my medications in a day dosette box and if I am further away than the town, I take a full box for 24 hours.

We ALL want to get off pred as soon as possible. But it isn't that simple: PMR is a chronic condition and the underlying autoimmune disorder that causes the symptoms lasts as long as it lasts. And as long as it lasts, it is creating inflammation which, if it isn't mopped up with pred, will just build up again until the level of inflammation and the symptoms are as bad as when you started on the pred. The pred has cured nothing, it is a management strategy to give relief from the symptoms until that autoimmune disorder burns out and goes into remission - which it does for probably 95% of patients sooner or later, unlike the majority of autoimmune conditions. There is no cure for any autoimmune disorder but PMR and GCA are unique in that time usually does the job of it burning out.

Bursitis is often part of PMR and that suggests to me that it wasn't dealt with properly at the outset. My bursitis took 3 or 4 months to go away with pred - after a 70%+ improvement in 6 hours. The hip bursitis rekindles every couple of years and needs to be treated in some way or it just builds up relentlessly as the PMR "feeds" it. Don't dismiss it as unimportant or it might get out of hand.