Steroid timing at low dose: Hello All, I’m at 7mg... - PMRGCAuk

PMRGCAuk

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Steroid timing at low dose

SnazzyD
SnazzyD

Hello All, I’m at 7mg for GCA and am suddenly unable to get through the day energy wise. At higher doses Pred made me feel drunk so it has suited me well to take my coated Pred at 5:30pm so I got the worst of it during the night. However, I am now feeling shocking after my nap in the afternoon and not recharged at all. I feel jelly legged, exhausted and fuddled until my next dose starts to hit bottom around 10pm. Mornings are my best time; I just run out of steam by the end of the 24 hours and I have no worrying symptoms at all. I am wondering if I should start taking my Pred in the mornings if my current dose is not getting me through daylight hours and my adrenals have not kicked back in yet. If so, how do I wangle it to get me to taking it in the morning without going too long with no Pred at all? My other question is, if we take Pred in the morning when the normal cortisol cycle would be doing the same, what ‘incentive’ is there for the body to kick back in and make its own at that time if Pred is there already?

18 Replies
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I can't answer your second question, although it seems to me that lowering the dose is what encourages adrenal production of cortisol no matter what time we take the pred. But you should be able to switch to the morning very easily. Just take your usual evening dose, then take a morning dose the next morning, The only thing that will happen is that first day you'll have a little extra pred in your system, which should give you a really good day!

SnazzyD
SnazzyD in reply to HeronNS

Ah yes, simple really. I was over complicating it in my head.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to SnazzyD

Easily done...just blame the Pred! 🤦🏻‍♀️😆

Sounds sensible to me to now take pred in the morning, ready for an ‘active’ day, rather than ‘wasting’ it on your sleeping body.

As I understand it your body hasn’t been doing any cortisol production all the time you’ve been at 8mg+ish. Now you’re at 7mg you need your body to make about 0.5mg equivalent just to top up the pred, but to do that your hypothalamus, pituitary gland and adrenal glands need to start talking to each other, and sensing the fact that you’re a bit low on circulating pred/cortisol. Then when they can squeeze out a weeny bit, you’ll ask them for another bit when you drop to 6.5.....and so on. I think maybe this is why 7mg is so difficult, almost enough, but adrenals just can’t quite get into gear (this is all supposition on my part as I’m still above these levels). And obviously that’s amazingly simplified, the endocrine system is vastly complex, but works on negative feedback, so it has to identify a need (low levels) first.

I know ‘short sharp shocks’ of pred (chest infections etc) are always prescribed as an 8am dose. But for us on it for years, I can’t see that time of dose would make much difference.

Would taking your nap a bit earlier help? Before you’re exhausted? Probably not, but your idea of changing dose time may well help a bit.

SnazzyD
SnazzyD in reply to Soraya_PMR

I was just thinking (at 5:30am due to a call about my husband’s work’s new burglar alarm going off 😡) if it takes about 5 hours for the Pred to start going in with the coated Pred, taking them in the morning won’t be much use. To get a morning boost I need to take them very late at night or early hours. Interestingly the last few nights have been rubbish for getting to sleep after spending the evening feeling lifeless. I suspect the dose is no longer enough to act as a sleeping pill of sorts but enough to make me lively again when it gets in to my system.

The nap is at 3pm because now before that I just don’t sleep or rest much. A couple of months ago any time after 1pm would do. I’ve tried earlier in order to go to an afternoon appointment or something but no banana; it’s like a switch now goes at 3pm and not before. According to that article on Cortisol cycles this is the body’s natural trough but whether that is just coincidence, who knows.

So, I suspect I’ll have to take it about midnight to 1am and eat much earlier to avoid the full stomach that has made it not work properly in the past. Not ideal but there you go. Perhaps that won’t make my evenings much better because I’ll be on fumes by then, but hopefully my afternoons won’t be so awful. Cooking dinner feeling like I’m made of jittery jelly while being tearful is not to be recommended.

Rugger
Rugger in reply to SnazzyD

I was feeling that my pred wasn't lasting the full 24 hours, so I split my dose as others do. At the moment I take 75% at bedtime/10pm as gastro-coated and the other 25% with breakfast as plain pred.

I like the idea that the night time dose should be around to tackle the cytokines when they're released around 4am.

It's a juggling act to try and achieve the best results!

Good luck.

Me: PMR 22months, 1 flare at 12 months and another recent flare, back up to 8mg last weekend.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Rugger

Hi Rugger,

It’s okay to split dose with PMR, but not recommended for GCA - which SnazzyD has.

Soraya_PMR
Soraya_PMR in reply to SnazzyD

Hmm, I took my GRpred at 3am and it gave me great mornings, but evenings were wiped out. I reverted to 8am and get better evenings and stiff mornings, I prefer that (of the two!) I stopped splitting the dose due to new symptoms, just in case GCA was lurking. If I (the chiro) can get rid of the headaches, then I may try splitting again. How about a split for you? I know not recommended for GCA, but is that at the high doses? Would it be ok at this tail end???

I can go with the 3pm dip. Pre pred that was my ice cold, wrap in blankets, and sleep til I thawed time.

One other idea: could you take plain pred now at these lower doses? I forgot to take my pred yesterday 😳 and took plain at 11.30. I kept my eye on the clock and by 12.45 I was released. OR 5mgGR +2mg plain taken at 6amish???

Ooh another idea: address the getting to sleep issue? Nytol? Amitryptylline? A better day usually follows a better night.

Or it may just be the ‘sickening sevens’ and you have no option but to be patient.

Hope you find something that works for you.

PMRpro
PMRproAmbassador

A study found that taking 5mg pred at night suppresses adrenal function more than 15mg at 8.30am. I don't know how that then works for waking them up again though.

The trouble is likely to be that, using the gastro-resistant form, taking it in the morning will delay it starting to work, it can be up to 5 hours or more before it kicks in because it takes so much longer to absorb (way below the stomach) and that is why it works taken overnight.

Although the received wisdom is that it is the equivalent of 7.5mg pred that the body makes as cortisol - it all depends on how much YOU absorb.

Do you still take some non-coated? What about taking that about an hour or so before you hit the brick wall of fatigue? That might act as the afternoon boost that is normal.

I am experiencing exactly the same symptoms as you - I also have GCA, and after 21 months am down to 8.5 mg of pred, the last drop from 9.0 to 8.5 has been a nightmare, exhausted all the time and not wanting or able to do anything, but like you no symptoms of the GCA flaring, but if I do too much feel not well. My doctor says it is because the adrenals and pituitary glands are struggling to readjust. I am only reducing by half a milligram a month using the dead slow method, so I think you just have to battle on and try and rest as much as possible. Oh it is so frustrating!

SnazzyD
SnazzyD in reply to Sho-Sho

I felt marvellous until 7.5mg, then empty tank. It does feel like I’m too low but not low enough for my axis lights to come on. Feels different to the illness fatigue and after a year of quite happily eating very low salt and carb diet, I want sweet and salt. My lovely GP has referred me to the endocrinologist for July, just in case, so that I can cancel it if not needed nearer the time, but I won’t be waiting for months if I’m on my last legs come June. Might try some visualisation, you never know.

Judy211
Judy211 in reply to SnazzyD

Hi Snazzy...I too was diagnosed March 17 and I’m on about the same dose. Excellent diet, done all the right things hopefully, but also now wanting sweet things occasionally.. and strong coffee, which I have avoided completely up til now. Anyway, I’m giving in to the odd sweet craving and the coffee and it definitely helps with my energy levels. Could be coincidence.... Just a thought!

SnazzyD
SnazzyD in reply to Judy211

I have to admit to the odd caffeine pick me up....

Suuha
Suuha in reply to Sho-Sho

I’m very much the same. Diagnosed with GCA almost a year ago, started on 60mg, now down to 8.5mg with no flares as yet. Much more tired this my first week on 8.5 from 9 but will be going slowly ,no more than .5 every 5 weeks or so. No rush if it avoids flares. But BP is increased and irregular heartbeat now occurring. On third medication for BP, the others didn’t work or affected my kidney function. This one, Dioxasin, I had upped to 6mg from 4 this week. Will be having a 24hour ECG monitor sometime soon. Can’t complain too much, still manage to get on with life......

Also forgot to say I take all my pred in the morning.

As a matter of interest how long ago was GCA diagnosed?

SnazzyD
SnazzyD in reply to Sho-Sho

Me? March 19th 2017.

Thanks - it's interesting to know how long it has taken you to taper to this level.

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