Nice idea while it lasted. The upside, which is grand, is waking up with no signs of PMR.
The downside for me, though of course maybe not for you, is sleep loss, which has caused me to abandon it.
Always been a night owl but since PMR I have been running on a 12-14 hour day, broadly waking around 10-11ish and in bed at 11-midnight ish, reading, writing, not yet ready for sleep but not planning on any more up and doing.
Pred at 2 am markedly shortened sleep, waking even at 6 and feeling wide-awake at that. Aargh. Moving the dose to earlier – 1ish – improved duration of sleep but not really quality and although more able to go back to sleep the sleep was not good quality. I was being at least semi-awake 8 am to 2 in the morning, an 18-hour day and far too much for me. I hoped my need for sleep would over-ride the Pred, but it didn’t. There were also other problems.
GI aggro? No, I’ve been lucky on the whole…Ha! Correct that to as long as I’m sitting upright. My oesophagus objected to being expected to transport tablets while horizontal. Washing the tabs down with lashings of water naturally played havoc with my on-the-whole organized frequency, the organizing of which pretty much revolves around little fluid in the latter part of the day. Cucumber helps indigestion in that it’s very, very alkaline. It’s also a natural diuretic. I didn’t think the 2 am dose was worth stuffing myself with Rennies.
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Your post made me smile because this whole process involves so many 'trial and error adjustments.' Last year, at 81, I was determined to alter my sleep habits with no success. You tried and you need the sleep....good job! I live in the States and had to Google Rennies!! Pretty soon I'll be speaking proper English. 💞
I'm so thankful it is....when I was diagnosed I couldn't find any info in the States much less support. I'd have been lost without this terrific collection of people!!💞
That must have been awful and worrying. From what I've read here a good few British people have had the same experience until they found this magnificent forum. There's an expression - on the tip of my tongue - 'orphan disease', that's the one. I think. Hardly anyone has heard of it
Annoyingly, PMR is hardly rare once you're over 50! On the rare occasions I mention polymyalgia I aways have to hasten to clarify it isn't fibromyalgia, which one site claims afflicts 2% of US population. Polymyalgia affects 50 in 100,000 over 50s in US. As I have no math skills I cannot compare these apples and oranges. But I expect as fibro turns up in younger people it's taken more seriously.
Sundry members of my family scattered around town. I've generally kept explanation vague - chronic autoimmune disease which will in due course go away (WON'T YOU, PMR). Sometimes makes me feel exhausted, making wet blankets and damp rags look dynamic. Controlled but not cured.
If you are up until midnight anyway - take it then. No need to wait until 2am in that case.
But you might also find the same benefit by splitting the dose. Take about 2/3 of the dose when you would normally take the morning dose and the other third later in the day and that should carry the benefit over to the morning.
Sorry, should have said, it was split, 5 and 5, rest at 5 pm. So a mere 5 mg acting like a couple of double espressos. I think the earliest I tried was 12.45 am. What would you say are the parameters here, what's too early?
What's too early? When it is so early the effect doesn't last until next morning. But half and half tends to work less well. 5pm is pretty late - you are aiming for as low as possible in the blood at midnight which is why we say the bulk in the morning to have the greatest effect on the early morning dose of inflammation, The effect then should last at least 12 hours so you take the rest, a smaller dose, so it extends the effect overnight and that time varies from person to person. Early afternoon should let you get to sleep.
Interesting! I was going by IL-6 being released twice daily, 2nd time a '7 pm rush'. Though I think I also read somewhere that the early evening performance is minimal compared to the one in the early hours?
It is also flattened in older subjects I think. All the literature I've read emphasises the surge in IL-6 in the mornings in the context of PMR and I imagine that is far greater than the normal diurnal rhythm which will probably be disturbed. But the greater corticosteroid level in the evening combined with the IL-6 being suppressed as a result will also contribute to the sleep problems.
Ah-hah. Found one of the things I read. I do bear in mind I am neither healthy nor young.
Studies that evaluated the 24-hour secretory pattern of IL-6 in healthy young adults suggest that IL-6 is secreted in a biphasic circadian pattern with two nadirs at about 08.00 and 21.00, and two zeniths at about 19.00 and 05.00 h
Finally, IL-6 appears to be somnogenic in rats and exhibits a diurnal rhythm that follows the sleep/wake cycle in these animals. We conclude that IL-6 is a mediator of sleepiness and its circadian pattern reflects the homeostatic drive for sleep.
I think I'm going to have to seriously try to get my head round the relationship to sleep in older humans.
Edit/addition: It was a frank shock. Pred/PMR have never done that to me before and I have taken the Pred at a variety of times, and in split doses. Just not that time. Even when I felt rotten, I could always sleep.
Yes that first link is the one I felt suggests it is flattened in older (and less healthy) subjects. And evening pred will suppress that IL-6 so you are less sleepy.
Think I'm getting confused. So a 5 pm dose zaps the evening IL-6 and a further midnight-ish dose zaps the dawn chorus, which sounds great only you or at least I don't actually sleep - so I need some IL-6 hanging around in order to sleep?
Basically - the evening IL-6 production is a physiological event - not a pathological one like the early morning one, You don't need to do anything about it. The ideal time to take pred to zap the morning lot is 2am. I think you are trying to overthing it and make it complicated.
I'm wondering if taking my entire 30 mg. around 9:30PM is causing terrible abdominal pain which usually wakes me around 3 AM? Perhaps I should try a split dose?
If it were me at a higher dose (really I think anything over 5 mg) I'd always make sure it was well beyond my stomach before lying down for the night, as well as taking it with a substantial snack, equivalent to a small meal (like breakfast). You must have described somewhere why you take the dose at that time?
I did post about it previously Heron. Probably 2 to 3 months ago. Take it with quite a bit of food actually and also take the Rabeprazole an hour before the Pred. I wait up about 45 mins. prior to actually getting in bed. Taking at night because it alleviates so many of the other side effects when I was taking it in the morning ie. shaking, sweating, weakness, fatigue; particularly when they upped me to the 60 mg. So as Pro said, I am probably sleeping thru the side effects. Or at least I was. Right now at 30.
Yikes, it does sound like you're having a rough time. What does your doctor say about this pain? Probably should be investigated as it's not a one off which could be something transitory.
Can you adjust your bed arrangements so that you are more upright than reclining to see if that helps? I didn't have stomach problems but some kind of referred pain from my spine was causing major shoulder pain which would come on after I'd been asleep for a while and wake me up, and I've had to organize an arrangement of pillows in order to sleep comfortably. Which I do now, but arranging the pillows every evening does lend new meaning to the term "making the bed" Have it down to a fine and fast art now!
Now that I think about it, I believe we've had this conversation before....
I found the 2am full dose 5mg to work well. I switched to bedtime 1130 to midnight, 2 years ago without any problems, so the last thing at night works very well for me.
Stuff your uncoated pred into empty enteric capsule and take at 11pm. The pred will be onboard by around 2am and it is processed differently so it can address GI issues.
I tried the 2am get up and take my dose plan and it was just too interruptive of my sleep. Yes, I got relief from morning stiffness but at the cost of being well rested.
I discussed this with my GP along with splitting my dose and discovered this works best for me. You’ll get there, just takes some trial and error along the way.
Briliant, thanks for the encouragement. But as to enteric - found this online.
My wife, Tamar, is the patient. She has always been prescribed prednisolone enteric coated. (For the past 15 months.) The prescription has just been changed to uncoated. I understand this is a cost cutting directive from the PCT - "Prednisolone enteric coated tablets currently cost £8.69 for 28 tablets of the 5mg strength. However, the uncoated versions currently cost £1.03 for 28 tablets of the 5mg strength." Some articles online suggest that the case for enteric coated has not been made categorically. However, Tamar has a history of ulceration, and after 3 days on the uncoated, she has had stomace ache, nausea, and also her blood glucose has gone higher than usual. I managed to persuade the duty doctor to change the prescription for now but will have to take up the issue of a repeat prescription with her GP. Any relevant experience or opinion on this here?
Only 8 times the price. Evil grin. Almost worth the irresponsible waste of medical time not to mention the taxi fares to get an F2F appointment with my GP and see her face if I tell her I really want a supply of enteric-coated, so I can have the empty capsules and continue to take normal Pred at 2 am. I might actually try it if I had GI problems but I don't. I was prescribed Omeprazole 3 years ago, never took it and never asked for a repeat scrip.
We cannot get enteric coated pred here in Canada, hence me going online to purchase the empty enteric capsules then stuffing uncoated pred tablets inside them. The brand I purchased was from Capsuline and didn’t cost that much considering it contained 1000 empty capsules (size 0) so they fit both 1mg and 5mg uncoated pred tablets.
What a fab idea. Are these gelatin tabs? And what size ? Never heard this before yet seems eminently sensible. I take my full dose (6 mg currently) when I go to bed around midnight (with a few teaspoons of yoghurt). I sleep well apart from getting up two or three times to pee and wondered if this was related to the midnight dose.
The brand name I purchased is Capsuline, the enteric variety (not gelatin, but enteric…there is a difference). I purchase size “0” which can hold both 5mg and 1mg uncoated pred tablets. I take one part of my split dose at 11pm nightly. Pred does make me urinate more often, but not too bad taking my evening dose as it’s delayed in enteric capsules so I don't usually have to urinate till around 6am.
There is added bonus of PMRCanada's use of enteric coated capsules - they mean you can take pred before going to bed and it will be working at 4am without having to wake up at 2am,
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Have it down to a fine and fast art now!
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