Should have taken more notice of splitting the dose.
Posted , 19 users are following.
Diagnosed with PMR last April and started successfully on 15mg prednisolone, I've since had 2 unsuccessful attempts to reach 10mg, (once was direct from 15 to 10 due to silly GP!! and once via dsns from 12.5) and am currently on 11mg. Have been experiencing lots of stiffness but only in the mornings and so very reluctant to attempt a third time to try to get to 10. Finally decided to give splitting of the dose a go, taking 2.5mg at night and 8.5mg in the morning - hallelujah - that works so well. This is my third day and I have no more stiffness in the mornings. I can't believe I've been so stupid not to try this earlier. I feel ready soon to have my third attempt and will probably do 2.5 p.m and 7.5am Just wanted to share my story of success for anyone else who also only experiences morning symptoms.
3 likes, 27 replies
nick67069 lbh
Posted
That was exactly my experience. In fact when I was at 12.5, just by splitting dose I was able to go to 10mg. I mentioned it before that pred taken late at night ( I take it at 1AM) was more effective that the same amount taken in the morning. I was splitting 50/50 and then most of my reduction were in the morning dose first, then evening dose.
EileenH lbh
Posted
Good - I like it when a plan comes together ...
andy34717 lbh
Posted
That has worked for me too, i was on 15 meg and now down to 10 by splitting 5 at night and 5 in the morning yeah 😃
lynda62707 lbh
Posted
thx ibh....I've been bouncing around for months now, but seem to be "stuck" at the 14-16mg range, currently on 15.
I've got alot of stiffness in my hands and fingers all through the day, but more predominantly in the am or after holding my phone typing for long periods of time (as I am now!😖)
I'm gonna try splitting my dosage Today....5 in the am, and 10 later this pm!
fingers crossed!!
BettyE lbh
Posted
Great it worked for you and good that we can all share our experiences. We never know what we might have to deal with ourselves somewhere along the line.
Has anyone's GP ever suggested split doses? I know that when mine said I could try taking my dose at night ( several years ago now ) it was considered quite revolutionary but it solved my hyper reaction to Pred., within days.
This is such an individual illness that we can all do with as much info. as possible and it worries me when we read so often that people are lead to believe there is a prescribed regime that will work for everyone.
There isn't.
Twopies BettyE
Posted
my gp who treats my pmr told me he went to a conference with rheumies where they specifically said they now recommend split dose for some of the autoimmune diseases. the two he remembered them mentioning were pmr and gout, as i recall. some autoimmune diseases should not be treated with split dose...ive seen it mentioned here on the forum several times but am not a savvy enough user to look up the posts. some others will, though.
EileenH Twopies
Posted
It has been said that split dose shouldn't be used for GCA - but a study found that actually it doesn't make any difference. Logic tells me that if someone's symptoms are returning within the 24 hours the inflammation is not adequately managed in the latter part of the 24 hours. So surely splitting makes sense?
lynda62707 BettyE
Posted
hi BettyE...I'm Just beginning to realize how individual this disease really IS!
that's just ONE reason I appreciate this forum so much.
if you are patient enough, there will likely be Someone, who's experienced Something, similar to you!
we've all got our own "stories", but it sure us nice to be able to share them and learn something else along the way!
TheRadman lbh
Posted
This is really interesting as I am still getting problematic morning stiffness and soreness having recently pushed up my pred to 20 mg and I had just myself considered trying splitting the dose morning and evening before seeing this thread. It makes sense to me given the symptoms are predominantly nocturnal to have at least some of the steroid in the evening. As far as my pharmacological knowledge remains the reason for taking pred as a single dose in the morning is it mirrors the body's physiological output from the adrenals however in treating the effects of PMR we are clearly not in a normal physiological situation. I was planning to split to 15mg morning and 5 mg at night time with an early reduction to 10mg morning and 5mg in the evening given I've only been at 20mg for 10 days (with a plan for 3 weeks at this level) and a split of 2/3 am and 1/3 pm seems the obvious way to go given the body does need the extra shot of cortisol first thing in the morning to get you going.
Seems like you are onto something, is this not a widely tried strategy?
EileenH TheRadman
Posted
"in treating the effects of PMR we are clearly not in a normal physiological situation"
Exactly! And we are on enough pred for long enough to experience adrenal suppression anyway so the concept of mimicking the normal production to make it easier for adrenal function to take up the reins when we stop pred doesn't work in the way it would if we were on a taper over 3 weeks or so which is more usual.
If people mention they have problems in the morning then one or other of us oldies will ask if they have tried splitting their dose - and coach them in how it works. So yes, amongst us is it a realtively widely used strategy, especially the other UK forum which is far busier than this one.
The first solution we suggest is waking early and taking the daily dose before settling down for another couple of hours so the pred is working by the time they get up - by doing so many people get value for money from a single daily dose. If that isn't enough we suggest splitting the dose - and how to go about it. Everyone is so different that while a 2/3 and 1/3 at 12 hour intervals split may work well for one, for someone else it keeps them awake. The various splits are legion - for some people the entire dose before bed works best, for others just a couple of mg a couple of hours before they expect the pain and stiffness to return is ideal. Splitting the dose often also often reduces the side effects - especially mental ones or the shakes.
Occasionally, however, we meet a doctor who has a hissy fit at splitting the dose, some even claim it is dangerous! But our view is that the pred must be used to gain the best effect on the PMR at the lowest possible dose. Just because the antiinflammatory effect doesn't last 24 hours doesn't always mean a higher dose will deal with that whereas splitting often will at the same dose.
A study found that the ideal time to take prednisone to minimise morning stiffness in RA is 2am - the peak blood level is achieved just before the cytokines are shed in the body. On that basis a German company developed Lodotra/Rayos which is a delayed release formula, it is taken at 10pm within 3 hours of a meal or with food and the outer coating breaks down, releasing the entire dose 4 hours later (so you don't have to wake up). It is more expensive in Europe - it is ridiculously expensive in the USA but some insurers will cover it. I find I have no problems with it and am sure a lower dose works well. I have next to no side effects I can identify.
But beware - you are talking about a 5mg reduction. That may work for short courses in infections, asthma or whatever. It rarely works at this level in PMR. You are not REDUCING, you are TAPERING, or titrating the dose, and top pred tapering experts (in the US if I remember rightly) have said that no step down should be more than 10% of the current dose. You aren't reducing relentlessly to zero, you are tapering to find the lowest dose that manages the symptoms as well as the starting dose did. In the early days of PMR that will be more than it will be later in the journey because as well as dealing with the inflammation due to each day's new dose of cytokines being shed in the body at about 4.30am there is also accumulated inflammation to clear out - akin to emptying the bucket faster than a dripping tap is filling it to eventually get right to the bottom. The activity of the underlying autoimmune part of PMR also seems to vary over time but experience suggests it rises and falls but does tend to reach lower peaks as time goes on, eventually settling at a lower more steady level where a low and constant dose is enough. But to start with, 2.5mg at a time is more than enough - it works for some people, others need to stick to 1mg at a time.
It may sound slow - it isn't slow if it works and you don't have to start over again! If you overshoot, let the flaring symptoms get established and end up at the start again, all that perceived advantage reducing that dreadful pred quickly will have been wiped out in just a few days and you may even find you can't get things under control again.
lynda62707 EileenH
Posted
Wfewww.....are you out of breath Eileen?😜😜😁
that was one hec of a reply!!
question?...why would splitting the dosage be dangerous?
Vicki200252 EileenH
Posted
Thank you Eileen, extremely informative.
EileenH lynda62707
Posted
A good question - I have no real idea why they think that. Horses for courses - there probably are places you shouldn't do it . Though dangerous as such - I'd be surprised if it was. Radman - any ideas?
Out of breath? That was a fairly typical reply from me over the past 8 years!!
Vicki200252 lbh
Posted
Good to hear about this,thank you for sharing, I will talk to my doc when I see him.
I hope you continue to feel a lot better.
karenfizz lbh
Posted
I too, found splitting the dose worked really well for me in stopping the morning stiffness; I took approx one third at bedtime and the rest on waking. However, I recently saw a new rheumatologist who was adamant that I shouldn't take a split dose, as she said that by doing so I would stop my own adrenal production. I said I thought it stopped anyway when on long term pred but she said no. So now I am back to hand stiffness in AM having gone from 10mg to 9 on DSNS method, with no flares (started at 20mg in June).I wonder what the group think of the rheumy's advice?
EileenH karenfizz
Posted
Personally, if her way was not working for me, I'd carry on as I had been and not mention it... She is certainly wrong about adrenal production of cortisol, it stops as long as you are on enough pred - although the other stuff the adrenals produce isn't affected.
lynda62707 karenfizz
Posted
hi karenfizz....I TOO was under the impression that your adrenal function stopped while on prednisone!
I don't think splitting your dosage should make any difference...but I'm not a doctor either!
please let us know if you get anymore info re this. I'm of the mindset that to split it up might work better for me😁
Anhaga lynda62707
Posted
Splitting is very helpful for some people.
TheRaven karenfizz
Posted
Absolutely no reason to stop the split dose - your rheumy is wrong. I agree with Eileen, keep on with the split dose that works for you and don't say a word about it. If your rheumy comes with more goofy ideas that threaten successful treatment of your pmr, you might need to look for another new rheumy! The lowest effective dose that stops the PMR pain - that's what matters. If it's a split dose that does the trick, then great!