What time to take Pred. ?

[suzy1959]

I am only just noticing that a few people on here have adjusted when they take their Pred. - instead of taking it in the morning, they take it in the evening. I have always assumed that that would make sleeping even harder than it is now for me ( I have to take Amitriptyline to help) but, apparently, it can help with sleep, presumably because the effects are not felt for a number of hours and kick in at the right time in the morning? I have never noticed when the Pred. kicks in for me and I tend to take it at about 8am most of the time. When I have taken it an hour or two later, I haven't noticed any difference in the effect. I would love to hear from people who have experimented with this.

[Meg1711b]

I started taking my pred, 11.5mg, at 10 pm ten days ago. I did this because I read that it might help with the significant issues I was having with fatigue and brain fog.

It definitely works better for me.

-It eliminated the problem falling asleep.

-I wake up more refreshed.

-I can move better in the morning and throughout the day, but am very careful to pace myself.

-The bouts of long lasting debilitating fatigue have been reduced to needing to lie down for 15-30 minutes on occasion.

-I did notice symptoms of muscle aches in neck, shoulder blades, and legs; and general malaise creeping back in the evening hours between 7pm and my dose at 10 pm. But it was easier for me to deal with those issues in the evening.

-There is some improvement in brain fog.

The biggest negative has been I now wake up to use the bathroom 1-3 times a night, but fall right back asleep. I think I will live with that, as the positives far outweigh the inconvenience of nighttime waking.

The evening PMR symptoms are now almost entirely gone. I think they are a good indicator for me of how I'm doing, so will try another reduction in a week if all goes well.

I should also say that about 2 weeks ago I stopped my part-time job to focus on my health, so I am under less stress.

[Meg1711b in reply to Meg1711b]

I take the regular prednisone, not the coated tablets.

I often respond to medicine differently than most people.

[Hidden in reply to Meg1711b]

Hi Meg, it was interesting reading your blog. You don't say how long you have been on pred to get to 11.5mg. I would be interested to know because your symptoms of brain fog and fatigue mirror mine. It took me 12 months to get to 10mg due to a flair 4 months after staring at 15mg and had to start again. Got down to 10mg this time using the dead slow - nearly stop method but still got a flare a few weeks ago, so I went up to 11mg for a week to see if things calm down. I also take 10mg of Amitriptyline at 8pm to help with sleep at night.

[Meg1711b in reply to Hidden]

Hi PeTee70,

I've been on pred for 11 months. Started at 20mg. Easy drop to 15 two weeks later. Took 3 tries over a month to get to 12.5. Then to 10 two weeks later. Back up to 17.5 for a week due to stress from daughters wedding (good stress, but still stressful!) Then tried to muscle my way all the way down to 2.5 over next 4 weeks, while completely miserable. Then back to 10 for 5 months or so-(with a couple unsuccessful tries at 7.5.)

Was never feeling "stable" on 10mg-3 or 4 slow, but reasonably good, days/2 bad days-repeat over and over. A month ago CRP spiked to twice what it was when 1st diagnosed. Went up to 12.5 for two weeks (during which I switched to pred at night) and felt good! Went to 11.5 two weeks ago and feel good. Ready to try 11 now-wish me luck!

[Hidden in reply to Meg1711b]

Thanks for your reply Meg, it's good to hear about how others cope with this 'thing' and good luck with your 'journey' on reduction. I have stayed on 11mg now for 8 days and find that there is improvement in pain reduction so I think the flair is on its way out. Most pain is in the morning until the preds start working and then the day is quite tolerable. I have never been pain free since reducing but certainly more tolerable than when it all kicked of where it felt that my whole body had been in a car crash. I keep an eye on PMRpro blogs, she is a real asset to this forum. Keep well and good luck. Peter

[Gosingen in reply to Meg1711b]

Hi Meg1711b

I'm reading with interest your post. I'm fairly new to this forum and very pleased to have found it. I'm long term pred user (5+ years) due to PMR/GCA and have always taken my dose am. Never been below 8mg and recently flared so up to 20mg now. Never even knew it could make a difference taking pred pm rather than am, I will discuss with my rheumy next time I see her. It sounds much better to have a decent day, and if pain/stiffness kicks in in the evening, not such a problem. Waking to go to bathroom not such a big issue.

Can I ask did you just not take the dose in the morning and waited until the evening to take it.

Good to read you're getting better, enjoy not working... stay well.

[Meg1711b in reply to Gosingen]

I took my full morning dose, and then another full dose in the evening. I figured It wouldn't hurt to have 1/2 day of extra pred, whereas being short of pred would likely result in negative symptoms.

[Gosingen in reply to Meg1711b]

Ahh thanks for your quick reply. Sounds a good idea to me. I will definitely have a good think about this suggestion. As I'm on a rather high dose of 20mg, what I might consider is taking half dose am and then full dose pm... then following day do the full dose pm and see what happens.

Thanks again.

[PMRpro Ambassador]

It also depends to some extent what sort of pred you are on - if you are taking enteric coated for example it is probably beneficial to take it just before you go to bed because it can take up to 6 hours (sometimes even longer) to achieve the peak level in the blood - it passes through the stomach and isn't broken down until further down the gut, that takes at least 4 hours, and then there is another time delay before it gets to the blood in any quantity. In some people it takes even longer for some reason.

I took plain white Medrol at night - otherwise it did nothing for me until mid-afternoon and the morning was useless to me. That was a different problem in fact but although I had a load of other side-effects (weight gain, mad hair and skin and a beard) I didn't sleep any differently. Now I am on Lodotra which you take at 10pm, it releases at 2am and reaches its peak in the blood about 4am. I occasionally wake at about 4.30-5am with "hot flushes" but that seems to be more the cytokines being released than the pred as it was actually better when I was at a higher dose of pred. I go back to sleep very quickly though.

B, on the other forums but not on here so I'll tell her story, had funny episodes shortly after taking the pred in the morning and was quite unhappy about going out because her legs felt so peculiar. Out of the blue her GP suggested she try taking the pred at night - problem solved and no more feeling peculiar. Her GP said he'd add that to his new-found fund of knowledge about PMR!

Another lady - can't remember which forum now - couldn't sleep at night but couldn't keep awake during much of the day after taking the pred, only really waking up in the early evening. By swopping to taking pred to the evening she slept OK overnight and was far more wakeful during the day.

S, on the NE forum, used to wake most nights to go to the bathroom at about 2am - so on the basis of the German research that found the optimum time to take pred to avoid morning stiffness is 2am, she tried taking the pred then, with a yoghurt I think. It worked well and she was able to reduce the dose further.

There are several people on the other forums who have split their dose to take a small amount in the evening which has improved their morning stiffness and even more who set their alarm for stupid o'clock if they don't wake naturally to go to the bathroom, take their whole dose with a drink and a sandwich/yoghurt they took to bed, and settle down for another couple of hours sleep - by which time the pred is working and the stiffness is greatly improved.

[Gosingen in reply to PMRpro]

This makes for really interesting reading, thank you. I may very well try changing when I take my pred to see if it makes a difference with early morning pain/stiffness, extreme fatigue etc and difficulty sleeping at night. I too have mad hair, too much facial growth (not what the lady needs) etc, etc. So the thought of changing is inviting, but I sure won't do "silly" o'clock. It's hard to have to write of half of your day before you can function with some normality. Thanks again.

[PMRpro Ambassador in reply to Gosingen]

Suppose what you mean by silly o'clock! If you normally start your day at 8am , then surfacing briefly at 6am isn't too bad. I do know one lady who is still working to takes it at about 4am to be able to get up at 6am to get to work. Now THAT'S silly o'clock in my book!

[Gosingen in reply to PMRpro]

Silly o'clock to me is 02am - 05am, but I could do 06am if need to. Will experiment and see what happens... thanks for your reply. Thankfully I don't work anymore.

[gailmax1]

Hi Suzy, When I was first diagnosed about 10 months ago I tried to learn everything I could about the disease etc. I started taking my dose of Prednisone at 4:30 am trying to mimic the cordisone that is released from the Adrenal Glands. Then a few months later I was feeling pretty bad come 8:00-10:00pm. I thought the Prednisone was wearing off for the day. I now set my alarm for 6:00am (if I wake an hour earlier I will take it then...) and take my prednisone and it seems to last through the evenings even though I do get pretty run down by days end.

I am still working full time 40-48 hrs a week and have a comute 1 hour each way to work.

Best Wishes, Gail

[Apaininthe]

I take mine in the evening just because that's when I am guaranteed a reminder from my hubby ! Getting up at 5.30 every day means I fall asleep in the armchair about 9pm anyway - don't think it has anything to do with the pred !

[Bonnig]

I take all of mine now in the am. I tried taking partial in the evening yet my hot flashes, night sweats and sleep issues were worse!