Unusual Sleep Cycle and Pred Timing

[msdale]

Hi, and thank you in advance for any advice, and sorry this is so long.

I have read that prednisone is best taken with breakfast in the morning - something to do with the body's natural cortisol cycle (?). My question is, does anyone know how that would be affected by someone with a different sleep schedule?

I generally work late at night, often going to bed between around 1 a.m., then getting up around 8, 9 or even 10 a.m. depending on if I can sleep or not. (I know that is not the best but that is when I naturally sleep, for years and works best with my work schedule.)

So I take my prednisone usually around 10 or even 11 a.m.

Does this schedule make the prednisone less effective?

I also am scheduled for adrenal gland, thyroid tests etc., which are supposed to be scheduled for first thing in the morning (again, the cortisol cycle if I understand correctly). Just wondering if anyone knows if I should schedule the test for later in the morning to coincide with my weird sleep schedule?

Have been flaring a lot, so have to wait for bevvy of tests until I am back down at a lower dosage (I was at 2.75 - 3.5 before latest flares). I just want to make sure I get the most accurate test results.

[piglette]

I take mine (coated variety) at 2am with a piece of hard cheese. It works very well. I don’t get up until about 9am or later even.

[msdale in reply to piglette]

Thank you - I am glad to know I'm not the only person who sleeps until 9 a.m. or later!

[PMRpro Ambassador in reply to msdale]

I don't get up until 9am - I am usually awake before that though!

[msdale in reply to PMRpro]

I've tried many times to go to bed earlier to be in alignment with whole Circadian rhythm thing, but even if I'm tired, my body is just so used to the 1 a.m. thing from work schedule. I have decided not to fight it. I work from home so have some flexibility, although I do have to wake up long enough to turn my phone on by 8 a.m. Maybe night owls have their own circadian rhythm.

[PMRpro Ambassador in reply to msdale]

They do - your circadian rhythm will have settled itself for YOU when you have done it regularly for a long time, That's why shift work is so bad for people because their rhythm never gets to settle and why when you tried to change it, it didn't work.

[msdale in reply to PMRpro]

Well, mine seems to have definitely settled. Trying to change it at this point is probably just adding more stress.

[PMRpro Ambassador in reply to msdale]

I wouldn't bother - life is too short to bother trying to conform to other people's times when you don't need to. Yours is a far more regular life than my daughter who works in the ED ever manages!

[msdale in reply to PMRpro]

I would totally agree with that! And kudos to ED workers - takes a special kind of person to do that type of work.

[piglette in reply to msdale]

I was not sure whether to admit not getting up until 9am or not!

[msdale in reply to piglette]

Perhaps too much 'advice' roaming around the internet telling us we need to get up at 5 a.m. ....... :)😇

[piglette in reply to msdale]

I do listen to the BBC Radio 4 Today programme which starts at 6am, although I tend to dose through it!

[Viv54 in reply to piglette]

Haha, don't feel guilty, I bet you have had to get up early for years.Since I've had PMR I get up when I feel like it normally around 9,30 and I still think it's luxury after getting children through school/collage etc..Plus work on top of it all.We have earned it !😊🌹

[piglette in reply to Viv54]

You are right. I remember driving along the M40 at around 6.30am on the way to Norfolk and there was a long fence in a field with “why do I do this every day?” It summed it up! Also driving from Liege in Belgium to the south of Paris for a 9am start and having to negotiate the joys of the Peripherique!

[PMRpro Ambassador]

Although many will say it is to mimic the natural production of cortisol that is pretty immaterial really as when you are on pred, the natural production is suppressed. The reality is maybe a bit more pragmatic in that the inflammatory substances are also linked to the circadian rhythm and shed in the early morning, usually about 4-4,30am. The sooner after that you take the pred, the less inflammation has been created and the less work the pred must do, Circadian rhythms do shift if someone has a fixed alternative sleeping/waking pattern but I don;t know enough about it to say when your "morning" shedding of cytokines might be, Naturally, cortisol peaks shortly before you wake, about 7-8am for most people.

People don't always take it at breakfast time and for people who go to bed at the more usual time of 11pm, the optimal time to take prednisone is at 2am so that it is at its peak at 4am after being absorbed from the stomach and processed by the liver to form prednisolone which is the active form. Then the pred is there ready and waiting for the inflammatory substances and can neutralise them immediately so the inflammation never gets hold in the first place. Some take it before bed to sleep through adverse effects, others so their morning is better, Some split it to get the effect to last the full 24 hours.

I would suggest that taking your pred as soon as you wake would be better - that is what usually works well for most others. But does your pred work well as you are already taking it? That is what matters - that you get the best effect and side effects are minimised, whenever you take it.

[PMRpro Ambassador in reply to PMRpro]

If the blood test is a basal cortisol , then normally it can be taken any time between 9am and 1pm. If the blood sample were to be taken in the latter end of that time span, it would be OK anyway.

[msdale in reply to PMRpro]

Thank you so much for all of the information - it is very helpful. Got it on the blood test - my doctor wasn't very specific so left kind of digging around for answers, so of course I come to this forum! On the timing of the pred - I take it as soon as I am up and about and have something besides coffee in my stomach. But that is a good point you make - is it working. I would have to say this timing so far does work for me, so I think I won't worry about it too much.

[Gimme in reply to PMRpro]

" and shed in the early morning, usually about 4-4,30am. "

And here I am, bang on cue, every flipping morning!

[SnazzyD]

What dose are you on since the last flare?

If you are much above 7/8mg, your adrenal function will be suppressed because the glands don’t need to work because the Pred is doing the job of the adrenal glands. They won’t produce cortisol until your body thinks there isn’t enough in the body. Until you get below 5mg there isn’t much point in doing an adrenal test because your glands will likely show low function. My Endocrinologist wouldn’t do a Synacthen test until I was 4mg or lower, because even at 5mg some people’s adrenal function will still be suppressed.

The body’s main trigger to make cortisol is being low about midnight. This is why we try not to have Pred in the system then, hence the morning dose. Some people still take their Pred in the early hours after 2am as it makes them more comfortable one the morning. I used to take my Pred in the evening but was advised to change it to morning for the above reason.

I wouldn’t say your sleep pattern is particularly unusual, 1am isn’t that late for a night owl and there are plenty of insomniacs here, especially those on high doses. The dose of Pred in your blood stream reduces by half every 2-4 hours so depending on how quickly yours drops it’ll be low by midnight if not zero.

[msdale in reply to SnazzyD]

Thank you so much. That is very useful.

I was on anywhere from 2.75 to up to 4 mg until last week, with occasional 5 for flares. But last week had (another) very bad flare that did not clear up with 5 mg like a flare usually does, so went to 8 for one day, then 7 the next, 6 the next and today had 5. Trying to get back down so I can get the lab tests. So will be back down to below 5 in a few days, hopefully, stay there for a while and then get the tests done. My doctor ordered those as I have had drop-dead fatigue, stomach pain, unusual muscle pain, etc. Also started hydroxychloroquine a couple months ago which I now have to figure out how that is affecting the mix...... This is such a do-it-yourself disease, isn't it!

[DorsetLady PMRGCAuk volunteer in reply to msdale]

This is usual advice flare - as not sure what you propose will actually get it under control -

healthunlocked.com/pmrgcauk...

As for -have had drop-dead fatigue, stomach pain, unusual muscle pain, etc.

Sounds very much like adrenal struggling -

healthunlocked.com/pmrgcauk...

[msdale in reply to DorsetLady]

Thank you. I think I didn't say at the higher dose long enough. My doctor wants me to taper down, understandably, faster than I can comfortably do. I've been on pred for over 4 years now, started at 10. The symptoms listed in the link (thank you for sending the link!) for adrenal struggling - I have most of those symptoms right now. I will continue to handle this flare, then get back to a dose where I can have the labs done, and go from there. All input is appreciated!

[SnazzyD in reply to msdale]

Adrenal function doesn’t usually switch on that quickly such that dropping down to 5mg or under for a short time may well not help. It can take months, especially if you keep having to go back up in dose. You will have the awful fatigue until your adrenal glands have recovered and this won’t happen until you have kept your dose well below 7mg. Your adrenal test will probably show low function but that would be expected and not cause for too much concern at this stage. Until your PMR is stable, you’ll be hovering around taking suppressive doses, but that’s the way it is right now.

Regards that horrible feeling, I found 7-5mg very difficult because the dose was still on the high side for triggering my own cortisol production but too low for my daily non-PMR needs. Until it got low enough for the body to trigger its own production I felt tired and empty, nauseated and emotional. There’s nothing that can be done to short circuit this bit and it can mean slowing down life in order not to crash and burn and end up going back up.

[msdale in reply to SnazzyD]

I've been mostly in the 3-4 mg /day range for a couple months, going up now and again to 5 and then dropping back down. This flare was so miserable (with some kind of weird back problem thrown in for good measure) that I said the heck with it and took 8 for one day, then 7, then 6, and now back at 5. I realize that isn't the proper way to handle a flare but was also afraid of running out of pred because my prescription is basically for 3 mg per day. But messaged my doc today who said she sent a refill on the pred so at least that's one less stressor. She told me that I could have the lab tests as soon as Monday if I'm on 5 mg from now until Monday. Very confusing, plus wasn't told how to prepare for the tests other than that they are to be done in the morning. Sigh.

Gosh, I'm starting to confuse myself now with all of this! I SO appreciate everyone's input!! I'm thinking I'll just get the labs done, they'll show whatever they show or don't show, and then carry on.

[PMRpro Ambassador in reply to msdale]

Here the standard information tells patients that blood tests should be assumed to be done fasting as that covers everything, It is advisable not to drink alcohol the evening before liver functions tests! Make sure you have drunk plenty of water so your veins are nice and available! You can't have too many bloods done - you never know when a baseline will come in handy!

[SnazzyD in reply to msdale]

If it’s an early morning cortisol you don’t take the morning dose if that occurs before your test time. Just saying that if your adrenal glands show low function, don’t stress, it’s very early days. Sometimes doctors panic but then an Endo will say, keep reducing and one day the lights will come on.

[PMRpro Ambassador in reply to SnazzyD]

Oooh - well spotted Snazzy, forgot that!!!

[Viv54 in reply to SnazzyD]

Interesting, you learn something everyday !Thank you 😊

[darkred]

Replies to msdale are packed with so much information I've been wondering about. I have put this page on my task bar. I hope that works, so I can read it again and again. Thanks to all of you for your knowledge and opinions.

[DorsetLady PMRGCAuk volunteer in reply to darkred]

You can save any post you think might be helpful - to find it again all you have to do is tap My Feed top left icon -H in green speech bubble -then you’ll see them .

Plus when you receive email notification- there’s a See all my Saved Posts> link written in blue to access them

[msdale]

I just want to say thank you to everyone! Honestly, I don't know what I would do without this group/forum. My sincere gratitude.

[Nightingales]

Thanks for the question. I often wonder about this. Since being retired before PMR, I have had an unsociable sleep cycle. Getting to sleep at 2-3 am with pain killers and sleeping pills and sleeping until 10. 00 am when my husband wakes me from a deep sleep. I immediately take my coated pred. I like to read until I get up at 12.00 mid day when the aches have subsided. It works for me but I feel a lot of judgment 🤣🤣

[herdysheep in reply to Nightingales]

It should be whatever works for you, Being retired earns you that right even more! Those that judge have poor knowledge/understanding

[PMRpro Ambassador in reply to Nightingales]

Have you tried taking the enteric coated tablets when you go to bed? They take a good 4 to 5 hours to get into the system and work so I reckon that would have you waking painfree, or at least in a lot less pain. But it also sounds as if you are at the very short end of the time pred's inflammmatory effect lasts, it can be anywhere from 12 to 36 hours. If it is around the 24 hours mark or more then you do OK on a single dose per day but if it is less then splitting the dose can cause a minor miracle with 24 hour pain relief. Take about 2/3 of your dose as convenient - "breakfast" for example, and the rest late enough in the day to extend the effect to 24 hours.

[Nightingales in reply to PMRpro]

Thank you! I did try it about 4 years ago but it seemed that I didn’t have enough pred during the day. But that was before I was on enteric coated. So I will try it again because if I take it at 10.00 am it may be mostly gone by the next morning. I could try a 10/3 split. My main goal is to try to avoid a flare as I have been on high doses because at about 8 to 9 mg I flare with very high ESR and CRP. I have multiple side effects from the steroids. That rock and a hard place syndrome. Thanks again PMRpro

[PMRpro Ambassador in reply to Nightingales]

But remember - you aren't heading for zero, you are looking for the lowest effective dose for YOU which isn't the same as someone else and some of us simply need more.

What your problems with pred - maybe others have been there and have suggestions. And have you considered TRYING methotrexate or leflunomide? They are NOT 100% successful but they do work very well for a proportion of patients to get the pred dose lower. Offered in that spirit of "let's try and see we'll stop if it doesn't work" rather than "you must and they WILL get you off pred" I have nothing against them because they do work brilliantly for some and you have to buy the ticket to win the lottery.

[Nightingales in reply to PMRpro]

Thank you again. I have been on Leflunomide for 3 months now. Had to have a two week break twice because of LFTs . I am doing everything I can. My need to get off pred is Avascular Necrosis, not to be messed with. Also diabetes, bone fragility and hypertension that are not behaving, although previously well controlled. Thanks again. Your suggestions and interest mean a lot to me. 💕

[Rostom]

The best time for me to take my prednisolone is at midnight - 1.00 a.m. It then, as it is enteric coated, has time for it to go through my system and fairly closely coincides with the time that cytokines are released about 4.30 a.m.

[gaqke10 in reply to Rostom]

This has also been a good pattern for me. I used to wake up with some pain, but taking the prednisone the first time I wake up to pee prevents that.

[Amkoffee]

I developed adrenaline efficiency because of my prednisone use. In my group of people with adrenaline insufficiency we talk a lot about the Circadian rhythm basing it on when we take our steroid. I would tend to believe that you could take it based on your own personal circadian rhythm and not that established by the norm of society

[micpenn222]

As far as the cortisol test goes I believe it should go according to when one usually wakes up, and not by some arbitrary time. I am a night owl also, and I recently had a cortisol test. I went to the lab shortly after I woke up, and before I took my prednisone, which was 11 am. The lab teck said that they only do cortisol test between 8 am and 10 am and that I was too late. Another teck chimed in and said to do the test and just label it as random. However, this is plain nuts, because a night shift worker could come in at 8 am after being awake for 14 hours and it would fit their criteria but would be the absolute worst time to get accurate results. Cortisol should be measured shortly after one normally wakes up as this is the time it would be highest to see if the adrenals are up to snuff.

[DorsetLady PMRGCAuk volunteer in reply to micpenn222]

If you feel so strongly about timings why not buy one online and do test at home…

Looking at Amazon.ca there are several to choose from.

[micpenn222 in reply to DorsetLady]

Didn't know you could buy a home test .... Thanks!

[DorsetLady PMRGCAuk volunteer in reply to micpenn222]

Don’t know how accurate they are … you may need to do a bit of investigating…

[RT18]

my mum with dementia doesn’t get up until midday 🙈🙈

We were taking pred then but she was having adrenal issues between 12 and 1pm - fainting.

so I now wake her between 9 and 10 am for the pred and then send her back off to sleep.

We also now split the dose 75%am 25%pm

Mini victory for me - last px I collected said to be used as directed by rheumatologist….who gave me free reign within our understanding here 😀😀 Finally to be released from the worry of those too fast tapers 😀😀 DSNS here

[Ruthie_64]

I'm probably no help but I have sai due to long term steroids. I set an alarm and take my first dose at 6am then go back to sleep til 7.30. I'm on 10mg daily and split 4x. So 5mg at 6am,2.5 at 11am, 1.25 at 3pm and 1.25 at 11pm. This works well for me with my adrenal insufficiency. So if you wake at 9 I would maybe set an alarm and take it at 7.30am? Then just go back to sleep. That way when you wake the preds are already in your system.