Hi, I have found this site amazingly helpful, thank you. I have a specific enquiry regarding the best time to take my split dose. When my rheumy advised splitting as I was getting pain from 3-4 am till about 10am on a single dose, he didn’t specify a time and I just assumed I should space them evenly, so have been taking them for the last 4 weeks at around 8-9 morning and evening. Since two weeks ago my sleep has been severely impacted and although I can tolerate this quite well, it is very annoying so I am thinking about changing the timing but need advice/ideas about what to and how. I see people wake and take them in the night, or at lunchtime, - my inclination is to take the evening dose much earlier in the day, but what would be a suitable time? and if it’s a big change should I just do it in one jump, or gradually move the time over several days? I should add I am on the first week of tapering, reducing my evening dose only, by 1mg per week and don’t want to cause problems with this. Sorry for such a long post! Would welcome any suggestions/advice, thank you 🙂
Help with timing of split Prednisolone dose - PMRGCAuk
Help with timing of split Prednisolone dose
A good way to try is taking 2/3 of the total dose at a convenient time in the morning and the rest later enough to extend the antiinflammatory effect to the full 24 hours. Often taking the smaller amount at lunchtime is late enough to achieve the desired effect and shouldn't affect your sleep as much.
The sooner you take the tablets in the morning, the sooner they are likely to take effect since the inflammatory substances are released about 3 to 4.30am and the longer you leave it after that, the more inflammation is created. It takes longer to wash a grubby floor because you left it 3 days than if you had done it immediately! Taking pred at 2-3am prevents that step altogether as the pred is there ready and waiting to neutralise the inflammatory substances.
You don't have to get UP, lots of people take the pred early and have another couple of hours in bed to let it work before getting up with no pain. I don't understand doctors who tell you to take pred at 8-9am to "mimic natural production of cortisol" because it doesn't: cortisol peaks at about 7am to prepare you for the day ahead but if you don't take prednisolone until 8.30am, it doesn't get into your system for an hour, 9.30am or so. Prednisone takes even longer as it must be processed by the liver as well and that adds an hour.
PS - that's not long!!!!! And easier for us if we have all the info instead of having to ask interminable questions.
Thank you for this. As I have been splitting the dose evenly I am not sure about changing to 2/3 1/3 at the moment whilst tapering weekly. Do you think this would work better, or shall I just concentrate on tapering and see how low I can get the evening dose without compromising on pain relief? Also re changing the timing, if I moved to say 6 or 7pm am I likely to see any improvement in sleep straight away or does it take a while for the body to react? Or is this change insufficient to make a difference? I could of course just try it and see but I’m a bit wary of changing too much at once and confusing my body!
I don't think you should be tapering weekly - you need at least 2 to 3 weeks on a new dose to be sure your new dose is still enough. The lower your total dose, the more that applies.
If it were me, I would just start taking the evening dose earlier, say mid afternoon, and see if that takes you through to the next morning in comfort, It is just taking the dose a bit earlier than you are. If that works and you can sleep better, taper that afternoon dose in small steps - not more than 1/2mg and not more often than every 2 weeks, and see when you notice it next morning. If it doesn't help your sleeping, try reducing the afternoon dose by 1mg and adding it to your morning dose until you have the 2/3 and 1/3 split. The larger dose being in the morning is quite important since that is the only time the inflammatory substances are shed, There isn't a second delivery.
I’m so sorry I didn’t see this until just now - not sure how but I missed it. So I’ve asked the questions you’ve already answered in my post which has just appeared further down - I wrote it a couple of hours ago but must have been offline is it’s only just come. Sorry, no need to answer them again! This is really helpful thank you.
That's fine - HU can be quite unreliable with notifications. On your profile have you selected all the necessary options to get an email telling you when someone has replied to you either on a post of your own or any other post? It is handy to be sure you don't miss something.
PS Click on Menu on the bar at the top of the page. That offers email preferences
Re PMRpro comments on notifications see this -
In previous post you had split them ..50/50mg we did suggest changing to 2/3rd am and 1/3rd evening which is less likely to upset sleep.
But you don't really want to be doing that at the same time as tapering - too much change to cope with.
Get through this taper - hopefully with no issues.. and then once things have settled - take your current evening dose earlier - depends how much earlier - if say 6 or 7pm then just do it... if you're thinking 3-4pm.. then maybe in 2 phases... with a few days in-between..
But it's all a bit trial and error and early days... so give each phase time to settle.
Thank you DL. Yes I think because initially I had no adverse effects re sleeping ( that only kicked in after a couple of weeks), and was blessedly pain-free I didn’t want to upset the apple cart. Am now waiting on an NHS community rheumatologist appt in 🤞🏻 2-3 weeks so will not be seeing my private rheumy again and am just following his schedule (which he adjusted after I expressed horror at his initial proposal of reducing by 2.5 mgs (25% of evening dose) each week for 4 weeks 😳) - it’s now 1 mg every week until I get as low as possible, although this still seems a bit quick to me. But no pain during the first week, going down another 1mg tomorrow. I would like to try changing the time, initially to 6-7 pm, but as I’m actively tapering it’s probably not a good idea?
1mg per week is still quick…. And definitely no change in timings until you settle at one dose.
Ok thanks, I’ll just continue with the taper then. Hopefully when I see the NHS rheumatologist they might slow it down a bit…🤞🏻
Hi Tribie, you could ask about the enteric coated prednisolone which is released more slowly into your system so if you take it at bedtime it can work on the release of the inflammatory cytokines at 3/4 am.
I was never any good at waking up for an early dose at 2am so I have always split the dose and it has worked for me. At high doses in the early days I felt pretty wired and slept very badly, but at least I could start the morning without the PMR stiffness.
When I say “early days” I really mean the months of learning how best to manage the PMR and I learned pretty much everything from this forum. The advice I was given by the GP was incorrect and I was not referred to a Rheumatologist, so I have asked for advice or picked up tips from the questions and answers here since 2017 when my PMR was first diagnosed. It is very much “early days” for you and you will learn how best to manage “your” PMR, with or without input from medics. One thing we all learn early on is that there is no rushing or bullying PMR, it does not conform to doctors’ regime, but you can learn to live with it and still enjoy life once you learn to manage it. Sorry, lecture over!
Thanks so much for this. Waking at 2am to take a dose wouldn’t work for me either, I was something of an insomniac before PMR anyway and would never voluntarily disturb my sleep! I really wish I’d thought about changing the timing of my evening dose before I started to taper, I had 2 weeks when sleep was elusive before my first reduction of 1mg a week ago - am meant to be reducing again tonight and then on-going until I get to zero or as close as possible, so it will be several weeks at least until I’m able to look at timing. I am wondering about maybe delaying tonight’s reduction and staying another week at this dose (9mgs) so I can alter time instead but my (private) rheumy was very keen for the evening dose to go down asap. Still, am not seeing him any more and am waiting for an NHS appointment so maybe I have a window of opportunity….I do have a medical background (was a district nurse until I retired) but it’s still daunting fiddling around with such powerful medication….and I’m such a newbie I’ve got a very long way to go yet!
I know I have said this to you a few times already - but I am concerned you are sailing into trouble by continuing with this 1mg per week reduction which is utterly crazy. I have no idea what world your private rheumy was operating in, but it certainly isn't the usual world of PMR. It is a CHRONIC illness and the best timescale you can hope for is up to 2 years and that applies for maybe a third of patients. By tapering headlong at 1mg per week, you are risking another flare. The more flares of symptoms you have, the harder getting it under control again becomes.
Ok thank you. How long would you advise me to stay on the current dose, having dropped by 1mg a week ago? I’m on 19mgs daily, 10 in the morning and 9 at night. Not touching the am dose at all yet. I do understand that I will likely be on steroids for at least a couple of years and very probably more, I think my rheumy was wanting to reduce the night dose quickly then go much more slowly after that. I’m finding it all a bit overwhelming at the moment, sorry if I seem to be ignoring advice - that’s not my intention, just trying to make sense of everything.
1mg every 2 weeks would be much better. I do understand his desire to reduce the dose of pred BUT the reality is that you need as much as you need and it is very difficult to reduce the dose until you have got all the built up inflammation cleared out first.
To do that, the ideal is to start the patient on 20mg and leave them on that for 3 weeks and see a) are all the symptoms well controlled and b) if applicable, are the blood markers falling steadily. If that is happening, it is fair to try 17.5mg for 2-3 weeks and then 15mg for 2-3 weeks if everything still looks good.
Some people can manage that speed of reduction but no-one can forecast who can or can't and our experience is that when doctors go hell for leather at this stage and the underlying disease process is too active, the inflammation goes out of control and the symptoms flare. Then it is even harder to get things under control. Going carefully at this stage can safe a lot of difficulty later and even reduce the total amount of pred required. But you really shouldn't work blind because when you go too fast, you can't see where it went wrong. That is what we are concerned you are at risk of.
I think you need at least 2 weeks at each new dose to have some idea if it is still enough. The fact you have split the dose the way you have has complicated things too. It is always a good idea to start with the standard once a day dosing because for the vast majority, that works well and simplifies things. Then you only change one thing at a time so you know what that change did.
Thank you this is really helpful. Re the split dosage, he told me to split 50/50, so I just did as he said. I’d been on 20mgs for a week so have had 5weeks now, the last one at 19mgs. I was still having significant pain at night until 11am on a single dose. But having split it that way I guess it’s too much to try and change it now? Of course over time I will by default be on 2/3 and 1/3 I suppose…
Re blood markers I showed very little change, ESR 21 (my norm seems to be about 6 (but from 6 years ago) but due to a muddle with my GP I’d already been on steroids for 3 weeks when they were done. So not much use really, anyway he said it’s more of a box-ticking thing than actually useful in determining appropriate dosage. At least the reduction is quite small at 1mg. I’ll stay on that for another week then and see how it feels before dropping again. One thing that puzzles me , if you are manipulating only one dose of a split, should the %decrease ideally be 10% of the total daily or individual dose? Thank you so much for your help, I’ll stop asking questions now hopefully 🙂
Sounds as if he's a bit in the dark - the 50/50 is not usual split for PMR.. and if 20mg wasn't cutting it, then maybe he could have tried slightly higher initially. But what's done is done. He's partially right about bloods being more of a box-ticking exercise, but not sure he's got the full importance of symptoms.
The reduction of 1mg might be small, but if it's too much, it's too much.. and what PMRpro is saying [and everyone else on her would be agreeing] one week at a dose [whatever dose it is [80mg or 5mg or anything in between] is not enough to know that dose is sufficient before you drop down.
Thank you, I’ve definitely got the message now! Will be staying on dose for at least 2 weeks before trying to reduce. I’m going to follow PMRPro’s advice and stay on current dose for another 1-2 weeks but in the meantime change the time of evening dose and see if it helps the sleeping.
"he said it’s more of a box-ticking thing than actually useful in determining appropriate dosage"
I think he's wrong actually. There isn't a fixed relationship but for an individual patient the ESR can be quite useful once you have done it and compared it to symptoms and status over time. Well worth a diary. If YOUR normal is 6 then that is what you should be aiming for, not just saying that "it is in range so that's OK". We all have our own normal and it is all them put together than makes the normal range. But if you have been chugging along at 20 for a while and then it starts to creep up steadily, that is a sign there is something up unless you have a cold or something that would also send it up. A single raised value doesn't mean a lot but it needs to be check a week or two later to see if there is a trend.
10% is just a guide and I suppose in your situation it is difficult to decide what to do with the split dose. But slower is always better than faster. You could TRY 1mg off each and see what happens. If you want to keep the morning dose steady, you could try 2mg off the later dose until you are at 10+5. If it works, great. And then reassess if you haven't yet seen the new rheumy. They may have another set of strange ideas! Including wanting to see you off pred quickly so THEY can see the symptoms and make their own diagnosis.
Are you just tapering the evening dose and leaving the morning dose alone? I mg weekly is very fast, barely gives your body time to get used to the new dose. But at least that is better than a huge jump from say 20mg to 15mg which is a usual starting dose.
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