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.

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  • Posted

    Thanks for the really informative reply Eileen. From some preliminary reading of my own the concerns about evening administration of steroid are that this is more likely to be associated with suppression of the pituitary - hypothalamic axis (which regulates the adrenals) and hence longer term issues with inadequate resumption of normal cortisol production by the body when the pred doses are tapered low enough that it should kick back in. However as you rightly point out treatment of PMR is going to take a sufficiently long time on steroids that some degree of long term suppression is inevitable and is the price to be paid for the great benefits of steroids on the symptoms of the disease in the first place. As ever there is always a trade-off which might vary from case to case.

    • Posted

      Yes, that is correct - a study, done in The Netherlands I think, found 5mg at night suppressed adrenal function in terms of the production of cortisol more than 15mg taken at 8.30am. So the mantra became pred should be taken at 8-9am in a single dose. Which makes perfect sense for the patient who is on pred for a 6 week taper as I was originally - long enough for adrenal function to be messed about so they might have problems when they stop. I would not suggest anything different for the short-term pred patient.

      But for the PMR patient who cannot get out of bed until after the pred has started to take effect where is the point of waiting until a late breakfast to take it? Pred takes a good 1 1/2 to 2 hours to achieve much relief - so it is approaching lunchtime before your day begins. The whole point of pred is to allow a better QOL until the a/i part burns out. So you have to adjust how you use it. I take pred once a day and even did alternate day dosing for some time - few side effects and no morning stiffness on the second day. There was some question of GCA and I stopped and have taken pred once daily since - I probably have LVV with overlaps. But it works fine however I use it.

      Rheumatologists were part of the study on RA patients (possibly even initiated it) that found administering pred at 2am was optimal for the relief of morning stiffness in RA - it obviously didn't bother them about pred being taken at unconventional times in a long term situation.

    • Posted

      Thanks everyone for your comments; this forum is such a valuable resource and a great sounding board to reassurance. I will go back to splitting my dose & let you know how I get on.

    • Posted

      I am one of the people that find it very helpful, and more effective to take most of my pred dose late at night ( ~1AM), but as I am reducing to relatively low dose 4-5mg at the moment, I wonder if reduction is harder because of the time I take pred and possible suppression of adrenals.

      I understand recommendation for short term pred users, but wonder if there was any study done that you know of that is more applicable to our case ( long term pred users)?

    • Posted

      Sorry - not that I know of. But let's face it - you are where you are and all you can really do is carry out your own study on a cohort of one!! I think it is actually a very difficult thing to study and draw a conclusion about. Just the differences between individuals are problematic - and you can't do a double blind crossover ...

      But you are at a low dose which is unlikely to do much harm, slow reduction will bring back adrenal function, just maybe a bit slower than if you took the pred in the morning. But if you did that you might not be able to function as well in the meantime, Rock and a hard place comes to mind.

    • Posted

      you are right, it is all about QOL and compromises. In my experience I need less pred overall if I take it at 1AM. That in itself keeps total accumulative dose at minimum in my opinion. Thanks again.

    • Posted

      When I found that taking mine at around 9.00PM worked, I stuck with it and it was still ok even at the low doses but I'm only a one woman study, of course!

    • Posted

      Hi everyone

      I did go back to splitting my dose which was working well; however on going from 10mg to 9 by DSNS over past 5 weeks I have had a flare (long haul flight UK to USA & on return couldn't walk when getting off the plane). Then my hands became the worst symptom with stiffness, but also some swelling and heat. On my return my new rheumy's letter had arrived; she reported CRP 26 even though at that time I was relatively asymptomatic, she thinks I may have sero-negative arthropathy in addition to the PMR. She's suggesting methotrexate, plus flu jab plus pneumonia jab plus Omeprazole for stomach (even though I'm not having problems). She also recommended increasing to 15mg again; and after 3 days of increasing disability I started back on 15, and the relief was instant- I forgot just how much energy I used to have!!

      So on looking through my notes of pred doses I realise that I did a two week drop from 15 to 12.5 and the same again to 10mg, so could this be a flare that has built up over the last few weeks of reducing perhaps too quickly? (this is my first set back).

      If so, how long should I stay at 15 before trying to reduce again?

      And what are people's opinions of the methotrexate etc?

      Sorry for the long ramble but I really value the info on here.

      Many thanks

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