As a result of another thread I found myself wondering if the time I take my 60 mg Prednisone does influence my sleep and my well-being during the day.
Now I'd like to open a discussion about your experience. When do you take your medication and how much and how do you feel during the day and how is your sleep?
I'm really curious about this. Thank you all for your contribution.
I have to take Thyroxine first thing on an empty stomach so if I wake around 6 am which I often do I take that then. I probably take my full dose of Prednisalone with yoghurt or porridge at around 8 am having taken Omeprazol between 6 and 8. This seems to work for me. I get a massive energy dip between 3 pm and 4pm and sleep if I possibly can for an hour or two. I get quite achey in the evening and these days I'm dead on my feet at around 10 pm. And go to bed and read until I sleep. This pattern is a big improvement on other timings I've tried. I am down to 9mgs Pred. Reducing slowly.
Is this the kind of thing you mean?
I feel as if the Pred. Effect kind of runs out at night and I would be in pain earlier in the evening if I took it earlier in the morning. I have never managed to take it in the early hours to avoid the shedding of inflammatory substance at 4.30am. Mainly because of having to line my stomach first. I often wonder if I'd be better if I did. I can feel pretty awful upon waking.
Yes, exactly what I mean. Thank you!
Hi Akino,
I always took my dose in the morning with/after breakfast. In the beginning sleep was disturbed but that's a normal reaction to large doses of Pred, but that settled, and normal sleep patterns returned after about 6 months.
Did feel a bit sluggish in the first couple of hours until tablets kicked in, but after that seemed okay, although I did sometimes have a nap mid to late afternoon - really depended on what I'd done during day.
When I was down to level when my adrenals needed to start working again, I was very fatigued and tried taking my dose around 2am, but that didn't work for me, so went back to taking at breakfast time.
Always taken mine early morning. I've never felt a necessity to take them at any other time as this has suited me from the beginning.
Can't really join in here - I'm on Lodotra/Rayos which is taken at 10pm at night with food (or within 3 hours of a meal) and its coating breaks and releases all the pred at 2am, the time a study showed was the optimum time to take pred to minimise morning stiffness. I never have a bad morning due to PMR!!!!
I also take Rayos at 10pm and I rarely have morning stiffness. It has allowed me to continue working and doesn't interfere with my early morning dose of Synthroid. I do however feel fatigued around 3pm so when I arrive home from school around 3:30pm I take a nap for an hour.
Rayos at ten pm, sometimes ten thirty if I'm running late. No problems in the morning. Not tired in the Pm. Shoulder pain from time to time but no stiffness. I find that being active reduces the burn/pain in my shoulder. Fleeting waves of tiredness on and off but they go as quickly as they come. I don't feel the dosage wear off.
Worst days for me are two to three days after a taper.
Always first thing in the morning for me, too. And always after eating a breakfast that included a small pot of 'live' yoghurt to line my stomach before the onslaught of the steroids! The effect of the steroids would take a while to kick in each day and I found I was always at my best during the afternoon. My sleep was disturbed during the early days whilst on 40mg doses but improved as the dose was reduced.
I'm a 9pm girl because Pred (40mg for GCA only) makes me feel very drugged and unsteady. I take enteric coated because the non-coated gave me raging indigestion all day even with stomach meds. I can feel it getting into my brain a couple of hours later. I still get indigestion about 5pm for some bizarre reason and sometimes at 11pm too, for which I take either Ranitidine or Gaviscon Advance.
Mornings start well but I feel shakey after about an hour or two of getting up at 7pm. By lunch I'm fine, by which I mean Prednisolone fine not normal fine. I get a dip about 4-5pm during which I must rest or I am rubbish from then on and I start to feel vaguely ill. If I rest for an hour I have enough go juice to feel even more normal than before for the evening, but nothing remotely like my pre-Pred days.
Like PMRPro I take Rayos at 10pm as printed on the side of the packet.
Can you say a bit more about Rayos? What is it and does it? Thanks!
Rayos in the USA, Lodotra in Europe, is a delayed release form of prednisone. It is taken at 10pm, either within 3 hours of a meal or with a substantial snack which creates the right conditions in the stomach for the coating to break open after 4 hours and release the entire dose of pred at one go. This achieves the peak blood level at about 4am so that the cytokines (inflammatory substances) which are release a bit later are immediately "dealt with" and do not cause any inflammation, the cause of the morning pain and stiffness in rheumatoid arthritis and PMR. This results in minimal (read no) morning stiffness and the result is often that a lower dose of pred is required as well as QOL being improved.
It is available in the USA, it is used in some countries in mainland Europe (Germany and Italy if you are lucky) but is only available on private prescription in the UK. A tub of 30 tablets costs about £25 whatever the dose, it comes in 1mg, 2mg and 5mg and you have to combine them to get the dose you need so 15mg/day requires 3 tubs of 5mg per month. Pricey!
Why aren't more of us on this? The price? If they really want us on lower doses, you'd think it would be given out more...
Partly the price yes. It is approved for use in RA with morning stiffness which is what it was originally developed for but even there the NHS have issued an edict asking for its use to be restricted. They are even disapproving of enteric coated pred being used as, originally, it too was more expensive than plain ordinary pred. Now there is little difference and by the time you add in a script for omeprazole or the like it actually works out more expensive.
But the main reason is that it isn't approved for PMR and the studies haven't been done which are a prerequisite for all that. And they cost money too.
When my PMR started 2 yrs ago I took my Pred with breakfast. I was getting stiffness and pain in legs on waking, so decided to try taking it at 11pm and found I woke pain free. I still get pain and stiffness in the evening after sitting for some time, but it goes off quickly after walking for a bit. I am now down to 8.5mg, started on 20mg 2 yrs ago. I take Alendronic Acid once a week first thing in morning, nothing to eat or drink for half an hour after.
Should have added, takes a while to get to sleep some nights, I find Hot Chocolate helps and a game of Sudoku.
Second night of taking Pred in early hour, 3.30am this time, only problem is having food with it. PAIN FREE again this morning!!! Yesterday felt ok all day, very tired in evening, stiff but only slight pain in back of neck.
Good idea to follow how people get on with various methods and times.
Hi. I take a small amount of live yoghurt to bed with me and take the pred with that in the middle of the night. Works really well and you don't need much. Don't even put the light on just sit up, spoon it in, go back to sleep. All the best cc 🤗
I just have half a cup of homemade almond milk ( I dilute it with water 50/50 otherwise quite expensive) with Pred - at one time 40mgs. I have it when I go to bathroom between 3 & 5am and wake about 8.30 feeling great. Except this morning. Got up at 2.30am and thought it was a bit early to take Pred. I wished I had because I then slept through till 8.30 and was very stiff and sore. I'm currently on 6.5mgs. I thought my adrenals might have kicked in with lack of soreness but now I think it's the Pred keeping soreness at bay. BTW never had any stomach issues taking the Pred with the almond milk.
I wished I could sleep till 8.30 am......
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