Link to study of nighttime prednisone taking - PMRGCAuk

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Link to study of nighttime prednisone taking

daworm profile image
14 Replies

rheumatologynetwork.com/new...

Good read, goes against the norms most Dr's think is right, as in 8am....

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daworm profile image
daworm
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14 Replies
EdithWales profile image
EdithWales

Very interesting. I always used to take it at 3am as I awoke at that time and I read it fitted in with the Circadian rhythm. Now I am down to 4.5 I take it at 6am as that's when I wake up. It has worked for me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi,

We have been advocating taking Pred early hours for certain patients on here for a long time - nice to see the medical profession has caught up

SheffieldJane profile image
SheffieldJane

That is interesting daworm. We did kind of know that the early hours were optimum for taking Pred. I guess it's the insomnia that puts me off and now the pain is secondary to the deadly fatigue and general unwell feelings.

Thank you for posting!

HeronNS profile image
HeronNS

Hmm, interesting. I'd like to know what's best when you want to wake up the adrenals, though.

daworm profile image
daworm

well...this study was for a lower dose than I'm on I guess, dont know how much that matters, so many unknowns with PMR...I think the adrenals will wake on their own as you taper down to very low dose or zero...personally I will deal with adrenals when that time comes..right now I really dislike having mornings so stiff and sore...so 8am isn't hacking it for me..whatever my Dr says...haha....

PMRpro profile image
PMRproAmbassador

I've been preaching this for a long time - but since Rayos/Lodotra (as it is called in Europe) is not available in the UK it isn't an option for most of the people on the forum so they have to wake at silly o'clock to take it! Some people do.

As far as the adrenal question is concerned, it shouldn't actually make any difference once you get to really low doses - and they will start contributing to the blood steroid level, just a bit later.

The morning dosing bit is really only for people on short-term pred - so they can stop taking it after a few weeks and go straight back to normal. Unfortunately a lot of doctors don't get that side of things - that we are on pred for a very long time and suppression will happen anyway. So for us - take the pred when it works best for you.

Lots of people do find that taking pred early is good enough - they wake, take their pred and settle down for another couple of hours by which time the pred isstarting to work. But aking it so that it is ready and waiting BEFORE the inflammaotry substances are shed in the body means the pred has less to do - and the dose you need is probably lower.

daworm profile image
daworm

I'm on board with all of that!!

TooSore profile image
TooSore

I am newly down to 1.5 mg. I am in the states so I can get the time released prednisone although I wouldn't know it existed if it wasn't for this forum. I feel every drop in dosage so need to be very careful/slow. My biggest issue right now seems to be myofacial knots. Should I be asking about this or just carry on as I'm getting close (fingers and toes crossed)

Have PMR /GCA and changed to taking Pred 9pm as couldn't function in the mornings. Made such a difference.

Jackoh profile image
Jackoh

Very interesting- thank you.

Rugger profile image
Rugger

I take the gastro-resistant pred at 10pm and it works for me. (Not Rayos/Lodotra) If I feel the dose doesn't quite last the full 24 hours, I take 1 or 2mg less of the coated tablets and top up the dose as plain pred with breakfast. I'm in the UK and I realise the (cheap version) coated pred isn't available worldwide.

Me: PMR 17 months, tapering to 7.5mg

BonnyQuine profile image
BonnyQuine

Confirms my own observations. (GCA - started on 40mg Pred Nov 2016; now 9.5mg).

After much experimentation with timings and whether or not to split the dose, I eventually found that taking the Pred all together towards midnight, before going to bed, is most effective for me. That's what I've done for months now.

It's UK enteric coated. Not all brands are equal - there is one I can't tolerate at all. The others all seem ok, though some seem to cover the 24 hours better than others.

daworm profile image
daworm

Same here..in fact just this week I relented to my DR's wishes and tried to take it more toward mornings not reaching 8am (wheres the science behind that number??) but more like 6am....nope...two crappy mornings, last night I took it when I woke up middle of night close to 3am....here I sit at 9:30 feeling good...I know there are good days and bad days but I think the timing of the dose (20mg) makes it easier to have more good days..and that to me is what its all about....be proactive about our own health..I read on here about people and rude doctors who dont seem to know or understand and I'm like "wow, that Dr would be long gone out of my life" of course its not always that easy I know....

Zebedee44 profile image
Zebedee44

This is a very helpful article and confirms my own findings that taking the slow release pred at bedtime (10pm) helps reduce morning pain and seems to be helpful in tapering to lower doses.

I am currently at 7mg and recovering from my first flare so taking a top up at breakfast time is an option but so far the nightly dose is keeping the PMR in check.

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