what’s the best time of day for you.
Mine is late afternoon. When pred is well seated sometimes evening.
Thanks 🌹🌹🌹🌹🍀🍀
little survey: what’s the best time of day for you... - PMRGCAuk
little survey
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Ronzy
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Mid morning at the moment, then my energy dips at about 4 pm and I have to sleep. This changes. I take coated Pred early in the morning. 🌹🍀
Good question. I would say mornings. I hit a massive slump late afternoon
Thanks what you on and what time you rate it🍀🍀🍀🍀🍀🍀
I'm on 9mg and take mine between 7-8am depending on when I have breakfast
Since I started taking my dose at night, I feel better in the morning than before. I also have more energy throughout the day, taking into consideration what activity I am doing, I usually have to rest or nap in the afternoon. I also get a bit of energy in the evening, not always, again depends on what I've been doing. It hasn't always been this way but for me, taking the pred at night has truly made a difference.
What time at night. Interesting
I might try that. What time at night?. It Amazing how we’re all different
If I didn’t take mine very early morning l would be struggling all morning.
The chemist said must take them after breakfast and desolve in or mix with food
I can’t see an issue with sleeping as I seem to get back to sleep ok at 5
We predders have to be innovative 😤
Best of luck folks and thanks it’s all very interesting 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀
As late as possible. At first it was a push to stay awake til 2 or 3. Eventually the time became earlier so now it's usually 11pm/12am, always with some yogurt. You should check with PMRpro, it is said that the inflammation starts producing around 4am, so if you can beat that, you've got it made. I would think that 5am would be a little late but if it's working for you?? I have also tried the split dose but it just didn't seem to work when I had gotten to the lower doses, as far as 4 mg. I flared and then had to go back up so started with the night dose and things are much better. I do feel it later in the evening so it kind of helps me so I can sleep. I still have the occasional toss n turn night but it's pretty few & far between any more. Good luck to you as well.
I set my alarm on watch never fall to wake me.think I’ll try it at 4 in morning
My silly downfall is just can’t seem to get to bet at a sensible hour for our condition 😤 always been a night rake
I have the same pattern as you. Take around midnight with yogurt. No problem going to sleep. Wake up around 6.30 pain free...work all morning , slump and sleep in afternoon for hours and then sometimes revive a little in the evening.Midnight dose has worked well throughout my journey and even at 60 mg never kept me awake (but I didn't nap the during the day then). The nighttime dose seems to make sense, the immune system really revs up at night ...if you let it.
I take pred at 7.15am. On higher doses I used to feel best late morning but got worse by late afternoon. I now feel better in the afternoon.
I generally take mine around 03:00 and that usually sees me through the day with little or few problems.
Are you still awake at that time or do you set an alarm? I ask because it works well for me to take my Pred about 3 or 4 am as I am usually still awake but I wonder if I am psychologically telling myself I'm not going to be sleep until then so no point trying? And then of course I end up sleeping until at least 10am and that's half the day gone so I feel bad and means I don't get out the house to do things unless I go a ay without sleep, as often happens 
I've tied taking it at midnight before I go to bed but that doesn't work, and nor does trying to wake up early. My circadian rhythm has always been owl-like
Hi TV, apologies for late reply been out with grandchildren most of the day. I generally get to bed around/by 22:00 and seem to wake up around then quite naturally nowadays. I generally get up, take my tablets and stay up. Comfortable reclining chair and usually take the beasties out for their early morning walk anytime from 04:00 onwards. I had been used for, many years, at getting up at around 05:00 for work, so guess used to early starts. I also realised many, many years ago with my OA that there is no point tossing and turning in bed and getting more and more stressed about not getting to sleep. Better to get up, have a brew, a read, change position by sitting in a chair and dozing or getting back to bed if possible.
I take my pred with breakfast about 9am. Mornings are by far my best time as I often crash around 2pm
Difficult to say. I take my pred around 8am. It takes me till around 10.30 to get going for the day after looking at emails, Facebook etc. Then I guess I get most things done decorating, gardening etc before lunch. After lunch I find it hard to get going again and end up running out of time. I always stop around 4pm. I have a bit of an energy slump between 4 and 8pm then I feel better till bedtime around 10.30 when I start yawning my head off!
Mine was 7p.m. but hospital tell me it's the wrong time. I now take them morning's in preparation for going into hospital for hip op. Sad thing is I've been on wrong meds and they are weaning me off controlled drug at same time so my body is well and truly confused.
I take my pred around 8 am. Feel best in the afternoon and evening as far as symtoms go but sometimes need an afternoon nap if i get overly tired. Im 73 and try to do things as norml as possible . Since hubby passed a few months ago theres always lots to do.
I take my 3mg pred at 4am, and go to the gym at 9am. Best time of day for me is when I return home from the gym, at about 10:30 am.I have been keeping this schedule for about a year (have had PMR for 4 years), and it seems to work for me. Trying now to reduce to 2.5mg, using DorsetLady’s taper method.
All very interesting how we vary tremendously how about spit dose people I tried slit today worked fairly well
But on reflection need to take second dose earlier might try again tomorrow.
Enyone know if it’s best to spit exactly or
A little bigger in morning.
It is usually suggested about 2/3 in the morning and the rest later enough in the day to extend the effect to next morning. It doesn't have to be 12 hours apart
Mine is late evening also- mornings are just awful for me. I take my prednisone at 7am. On 7mg right now.
Don’t you fisle out before tea I would.
I do have an afternoon slump- around 2pm. I am 59 yo and have GCA- Dx Oct 21- never DxWith PMR; Started on prednisone 85 mg then and now down to 7mg; I’ve had to quit work as a university professor in graduate nursing due to all of the side effects and symptoms; on methotrexate and Abatacept to help me taper steroids; just a daily roller coaster on how I feel; wondering if I will ever go back to work.
Never really, I'm tired all day and then come alive late at night and lie awake until 4am thinking about every stupid thing that I've ever done in my life or has been said to me 
Seriously, I've tried all options for when best to take the steroids and not found a solution. I'm definitely an owl not a lark so can't get up early and take them. If I take them before bed I can't sleep. 4am would probably be the best time but then I'm psychologically telling myself I'm still going to be awake at 4am which woudl be a self-fulfilling prophesy
I set my alarm 🤓
Sounds a good idea but no way for me, if and when I finally get to sleep I don't want to be up again a few hours later. Sleeping 4 til 10 could work for me if I can get over the guilt of missing half the day
Boy I can relate to that, tangocharlie! I was pretty much a night owl most of my life. Since my diagnosis with PMR, (and becoming a widow), I know what you're talking about with the lying awake thinking about every little thing that pops into your head. What did I not get done today? What could I have done differently? What do I need to get done tomorrow? If I don't get to sleep, I won't have any energy to do anything tomorrow and the viscous circle starts all over again! Maybe it's pred, maybe it's grief, maybe it's PMR, maybe it's stress, maybe it's a combination. I don't know but I kind of felt disconnected and couldn't think straight, PMR brain fog? It was a challenge to even try to figure out the pacing and trying to get back to a routine mystified me. I used to be a very organized person but I just couldn't seem to get motivated, lost my sense of where to start. It was overwhelming. I had and still have, a lot of work to do. Before my husband died, we also had a house fire and I'm sure that also contributed to my predicament.
Here's what I found helped and continues to help: Do a "Brain Dump". Have a pad of paper and pencil handy by your bed, where you rest during the day, the kitchen table, take it with you everywhere. Even the Dr.'s office or anytime you have to wait, like getting a test done. Seriously, I spent time going through everything on my mind from just writing down thoughts of how I was feeling to lists of the things I wanted to get done to questions to ask the Dr to upcoming appointments. After about a week or two of going through everything and keeping track of my thoughts, I started to get detailed. A step by step, what had to get done to get the whole house, plus, organized, (part of the pacing process). I started to relax. I felt a bit more in control but I also felt exhausted. I was on a mission and suddenly it was as if a damn broke and then there was a shift in my whole way of thinking. At first I couldn't sleep, I was awake anyway excited that I had a plan, so I decided to take advantage and watched the time. As soon as I hit 3/4am-ish, I would take my dose of pred, have my bit of yogurt, maybe write a bit more then off to sleep. Then I started to have to force myself to stay awake, because I felt so much better in the morning, I could get things done and I was tired earlier. Falling asleep with the notebook in my lap while trying to think things through started to happen. If I start "thinking too much" I start writing it down. It took a few weeks to get to where I was able to relax enough to get to sleep at a decent hour but it definitely was worth it. I still get an occasional night where I can't sleep, like last night, but it really doesn't happen that often anymore. I also had to accept that I wasn't going to be who I used to be. I have an illness and, most importantly, I need to rest if I am going to get any better. If that means I don't go to sleep til 4am and I sleep until 10am or noon even, so be it. It's a process of working things out and trying to make it better for your body. Maybe I do waste half the day but really I'm not. It's like being on 2nd or 3rd shift. You're not wasting the day, your day just starts at a different time and you shouldn't beat yourself up over it, even if you need a nap or two. Does it really matter if you work on something in the late afternoon or early evening instead of the morning or afternoon? Does it matter if your energy comes later rather than early? Acceptance plays a very big part! Remember you are working towards a goal to have a better quality of life and better sleep. I now get to sleep most nights around 12:30/1am and I usually get up around 7:30/8am depending on what I did the day before, of course.
Sorry for rambling, but this was a significant change for me, I hope this can help you and others.
Well Done Catdance - I feel you writing all that down will help others but was probably cathartic to you as well. Wishing you as good a health as you can get.
Many thanks for the wise words and fresh perspective on things. I like the 'see it as a different shift' analogy. I do a kind of 'brain dump' before I go to bed and write my diary and gratitude list and To-do list for the next days so I don't have to think about such things, and have a pad of paper and pen near the bed if I suddenly think of something I need to remember. My mind has always worked best late at night and I've never been a morning person even as a teenager. I had to be self-employed most of my working life to work around it in a world that resolves around larks not owls and forced me to do things like run training courses that started in the mornings all over the country. That way I could deliver training a few days a week and wrk from home the rest. I used to deliver training courses in Personal development and communication skills, which included Time Management so know the theory and confess I love lists! I still haven't cracked the procrastination tendencies though 
You're welcome but I never considered myself to be wise. Lol! Just glad to help in anyway that I can. At least hope that I do help and not just sound like a know it all.
"My mind has always worked best late at night and I've never been a morning person even as a teenager."
Boy do I totally understand what you're saying! It sounds like you had a very active life before PMR and you were quite young and it sounds like your job was something you enjoyed? I get that too! It's difficult to deal with the procrastination when you're also dealing with disappointment in yourself. I still have days when I just can't get passed that hump. It seems like I don't get done what I used to or nothing at all but I have to keep reminding myself that every step towards going forward is a step in the right direction. On the days I don't get anything done, it's a day my body, (& mind), needed to rest. Tomorrow is another day and it will be better, almost becomes a new motto!
I love lists too! It feels so good when you can cross the things off! Even more so now! However, Time Management, since PMR, I have struggled with. I was feeling overwhelmed and my thinking was in the "Big Picture Mode". Getting things written down has helped and I found, for me, that once I got everything down, writing the "To Do Lists" & making a schedule came easier. I could break the lists down into the chunks I needed so I could start thinking in terms of, "What can I do?" That "damn procrastination" is a stickler. I think what was so difficult was learning to think differently; in chunks, writing down a complete breakdown as opposed to just writing down the project name. Just couldn't grasp that right off. I guess I was too used to just going for it and not thinking about having to rest in between all the time. Now I pick my projects/chores and even if I only spend a few minutes, it sometimes tricks me into thinking I CAN do this, and, sometimes, you just have to "Eat the Frog" first!
As well as a to do list I have a 'Ta da!' list where I write down the things I've actually done, seems a postive alternative to looking at all teh things still on teh To do list. I got nothing done yesetrday, I was too tired, and by yesterday afternoon said what you said above, 'tomorrow is another day'
Yes I was only 51 when I got PMR and in my prime, tried to soldier on as normal for the first 4 years but had to give up work in 2017. Not just PMR going on, I'm severely sight impaired, registered blind, and the 2 together made life as a trainer impossible, I had to give up driving, kept tripping over things in the training sessions, would work 1 day but then needed 3 or more to recover. Eventually a mate who is a GP said you can't go on like this, I have people coming to me for sick notes who are nowhere near as badly off as you. I still grieve for the past life though, work gives you your main purpose, your reason for getting out of bed and I was great at what I did, and a high-earner. I've slowly replaced it with other things like volunteeering for the chairty PMRGCuk and other things but still there's a void. Counselling from the RNIB helped a lot. Financially illness has cost me about £250, 000 in lost earnings and it's a struggle living on benefits. But hey as Jinasc would say, 'Always look on the bright side of life .....'
Wow! Hugs! I understand living on benefits. I have been on "widows pension" through Social Security since my husband died and then PMR hit almost immediately after so I couldn't get a job because of the illness and probably my age would've been a factor as well.
So you did like cross country training? I was just wondering if you could do something on a consultation basis or remotely?
"Always look at the bright side of life...." Yes although that can be difficult at times. So glad for this forum and the so many that make up the bright side of life!
Thanks, sorry I think a wave of self-pity hit me yesterday, I'm on a bit of a downer atm. I will bounce back, always do. Sorry to hear about your husband, intersting that many people say their PMR started after a great stressful event like that. I love connecting with so many strong and articulate people on here and think we are all doing our bit to help others with these diseases and change things for the better, and that's a good goal to have in life isn't it?
Yes it is! And don't be sorry, we are all entitled to having those days. I wish you brighter days ahead! Thank you also, I have enjoyed our conversation!
Please don't allow negative thoughts to break through...every time you rerun them, you reinforce them. Try listening to an audiobook...or BBC world service...it is especially effective if you use an earpiece. You are listening to the past ...leave it there. Listen to something that blocks it out...it is a trick that can be learnt. Banish those demons.
Whatever time you do decide to take your pred stick with it...it impacts on so many physiological functions. If you keep taking it at the same time it does become part of your overall functioning (or non-functioning).
I am tired the whole time but I can fight it for about 7 hours in the mornings (I take pred at midnight). But I am physically struggling with low evergy/stamina the whole time. Others seem to be doing much better...so individual.
Hope you find things improving...or at least not getting worse.
Thanks for that 👍 had a really good day today took first dose at 3 in morning 😱20 mg then second 10 mg at 11 am working really well. I’ll stick with it for a while. If I take it all at once I was getting lots of side effects 👍👍🍀🍀🍀🍀🍀🍀
Thanks for the excellent advice. Thanks to mindfulness training I usually nip the thoughts in the bud by saying to myself 'is that a helpful thought???' and if it isn't smilig to myself and letting it go .... I also try to remember to come back to the breath or do a body scan meditation. Like yiu say, it's a question of getting into good habits as practice makes progress. Why do yu think yiu're so tired? Is it fatigue or not enough sleep or a bit of both?
So pleased to hear from you. I think I might be asking too much of myself. I battle the tiredness and work very intensively from 7 a.m. until 2 p.m. every day...basically on detailed document work...then I'm finished. I work every day like this (7 days a week)...but if I take a morning off I just slump...I have had blood tests and all is ok. It is fatigue...doesn't matter how much sleep I have, I wake up tired...zero physical energy...but at least i am still alive! all the best to you
I'm not sure the words 'battle' and 'tiredness' belong together, surely that just causes stress which makes everything worse? like increases inflammation? PMR and GCA are life-changing illnesses and sufferers need to make adjustments, if you keep on doing what you've always done you'll keep on getting what you've always got. I'm often tired, which for me anyway is slightly different to fatigued. I've tried to establish possible causes:
- not enough sleep
- poor quality sleep eg waking up often due to sleep apnea
- ruling out other causes (which hopefully yur doc has done, though it's wrth asking what else can we do?
Thought this was an interesting article last week:
Curious, are you required to do the document work on a computer? It could be the blue light from the computer. Just a thought. PMRpro's post below is very interesting and worth the read.
"I think I might be asking too much of myself." Maybe you are on too low of a dose for the amount of energy and stress that you are handling? Are you still on 4 mg? Could it also be the adrenals affecting you? Definitely sounds like a discussion with your GP or Rheumy might be needed.
Yes, I do that. So I try to sing every song I know (in my head) instead. Just the happy ones. It does work to some extent!
Music is a real help for me. I put on a shuffle of my faves when cooking and it really lifts my mood. On my list at the moment ... Kate Bush (a fan from always, we share our birthday, day and year, why is she famous and not me 🙄) Sia (the earlier albums) and Alt-j
I take levothyroxine for hypothyroidism and then a half hour later take7.5mg between 8 and 9am. Mild soreness neck, shoulders knees, ribs. By noon better and by 3 pm ready to boogie until midnight. Some afternoon tiredness that responds to movement. Just got test results back and CRP has gone up to 13.2 with SED normal so I imagine at my appointment on Monday I will up the prednisone. Maybe will get more accomplished earlier than noon then!
2am, with some yoghurt. Wake up feeling great. Received this advice from PMRpro, been doing it for 2 years, really works for me.
When I was on a higher dose I did split it and took one dose at 4am with a stomach protecting pill and the other with my lunch. When I got down below 3mg I started taking it all at lunchtime but found I didn't have very good mornings, so I changed to taking it with my evening meal (around 6pm) and that seems to work well for me. My issue is now trying to get lower than 2.25mg. I tried a couple of times to get to 2mg but even with a slow taper my body isn't impressed. As PMRPro says - I will get lower ...... just not yet.
One problem may be that you are taking it so late in the day - so there may still be pred present at midnight which is when the signals are sent to the body to produce cortisol in the morning. Best would be to try to get at least 10 hours before midnight. Is the early morning not an option? That usually allows the pred to get to work - ideal is 2am.
Interesting. I stopped the early morning dose as I wanted to stop taking the stomach protecting pill (one less pill in my vast collection!!) I didn't want to get into waking up and eating yogurt as I felt I won't be able to get back to sleep again. Are you saying that I may find it easier to drop if I change back to an early morning dose? It's certainly worth a try.
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