Normal two hours

[galp]

Hello

Curious

When I first wake, since on pred, about 3 am regardless of when i fall asleep ,I get up for a short bit, return to bed, or get up, and its a time when I feel so well.

Its like. I was Pre pmr/ GCA? ( biopsy back wed ) pre pred..

I take my med (40 mg till thursday then 30 , from 60 last week)

and then the hyper rollercoaster begins, as well as minor shoulder pain. very mild. But thats ok.

I am just curious if anyone else has this nice time period before pred dose time. Reminds me how good it feels to feel good. And gives me resolve to do all I can to assure that will happen

Its lovely

be well

Gina

[SnazzyD]

Hi,

Yes, the golden hours. I take mine (40mg, 3 weeks in) at 9pm because I can't function an hour or two after taking them. I sleep well and wake at 6am full of beans for about three hours. I've had to really slow down now and have had to take sick leave from work. Anyway, by 3pm I need a proper lie down and feel slightly ill for about three hours. After about 6 or 7pm I have some hours when my head finally feels ok, I don't feel like a truck has hit me and I can do things again. Then it's pill time again.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Hi SnazzyD,

Just as a matter of interest why do you take them at 9pm? Just because you can't function for a couple of hours, or another reason?

As you're off work, do you need to get up at 6am? Guess so, if you've got hubby and kids to get out the house. If not, you could take Pred at 6am, then try and get some more sleep. Or just rest for a while until they take affect - 2 hrs is about normal.

That way, you might find you could manage your days better.

But as we always say, find what's best for you. Take care.

[PMRpro Ambassador in reply to DorsetLady]

I know several people who found they felt really unwell a couple of hours after taking their pred. One told her GP who off the top of his head suggested she try taking her pred before bed - it worked brilliantly. I used to feel most unwell if I took my pred and went out to do certain things at about that sort of interval. I was fine earlier, fine later, just this about an hour period where I felt decidedly peculiar.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Okay, always interesting to see how different people react to Pred.

Although it gave me some pretty horrible side effects it never upset me in the way you, and others, describe. Touch wood, neither do other tablets .

Mind you, hubby always said I had a cast iron stomach! Compared to his side of the family - I have!

[SnazzyD in reply to DorsetLady]

it started by accident when the next day and dose after thecone in A&E everyone thought that someone else had my steroids covered. It wasn't until I asked when I was getting them they realised and said I had to take them that evening without fail but would get a sleepless night. I felt unable to stand for two hours so lay there waiting for a lonely manic night. Next thing, I woke at 5am feeling ok (ish). I've never looked back, but the night loo trip is dicey and i sometimes need to crawl for safety. I'm pretty sure that if I wake early to take them I'll not go back to sleep but lie there feeling nasty.

It does bother me that my stress juices are running lower at a time when I'm more likely to need them most. Taking pills at night seems illogical in that regard.

I'm a morning bird, always have been. So no matter what is the matter, what drugs I'm on or how little sleep I've had, I come alive. It is no hardship. Luckily hubby and kids are independent enough to get themselves out, though I'm usually their brain in the morning.

My logic plus still small experience in this says that when my dose gets lower and I have less of it about, I may need to think about 'walking' the dose time through the night by a couple of hours to end up taking it in the morning. Or another way of looking at it is that my adrenal function might be forced to kick back in more quickly later on if my body is not getting a helping hand during the day. Who knows? I'm sure I could over think this massively.

[PMRpro Ambassador in reply to SnazzyD]

You don't need to "walk it through the night" - take a part dose to compensate for the extra x hours and then go to what you want to do. It's only the same as travelling across time zones. On the long travel day I take my normal dose and then a smaller dose at some point to carry me over the extra hours and then take the next proper dose at the same relative time, in my case 10pm at night.

And adrenal function won't return until you are somewhere south of 10mg/day. Whatever time you take it.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Okay. That explains it! Usually its recommended to take in morning, so you get the best effect to last you through the day.

I just thought it strange - with GCA you're obviously taking quite a large dose, and I would have thought that it would have given you a disturbed night. My sleep was bad enough taking it in the morning, and having all day to work, dread to think what I would have been like if I took it at night.

But as I said to PMRpro, although I got side effects, I didn't have any problem actually taking the Pred like you, and she felt/feels. Horses for courses, I suppose.

As already said, won't make any difference to adrenals - unfortunately!

Don't think too much - it becomes too much of an effort after a while!

[BonnyQuine in reply to DorsetLady]

At the large doses, Pred made me sleep a lot - night and day.

Now down to 16mg, still sleep during the day, but less at night. Thinking about it, as far as am able!

[BonnyQuine in reply to SnazzyD]

Sounds familiar.

I take mine around 11pm - midnight, for similar reasons. Used to wipe me out during the day. May change as dose reduces.

[DorsetLady PMRGCAuk volunteer]

Hi Gina,

Actually it's not related to the time before your Pred, it's related to the time before your body produces the cytokines (around 4am) which then go into overdrive and cause/help cause the inflammation and pain! That then stays with you until the Pred has time to work on the problem (about 2hrs if you take uncoated tablet, slightly longer if coated).

But enjoy it whilst you can!

[galp in reply to DorsetLady]

Dear Dorset Lady

Well that so explains it. Amazing

Worth being awake for..

take care Gina

[Joan-E-D in reply to DorsetLady]

I used to take my Pred. at breakfast time, but I felt pretty bad with limbs aching, weariness and brain fog when I got up and for several hours after taking the Pred. After reading about the cytokines at 4.00 a.m. I tried taking my Pred. between 3.00 a.m. and 4.00 a.m. which is when I usually have to get up anyway to go to the toilet. I eat a bit of my breakfast and then go back to bed and sleep some more. It means that I don't feel so grotty when I get up again at about 8.30 a.m. for the second part of my breakfast and I can function better in the morning instead of having to wait until the afternoon. So far its working quite well with only dull aches in my arms and legs and I'm not so dozy either.

I'm on 12 mg Pred. having had to go up from 10 mgs after dropping down too fast from 15 mg to 10 mg all in 1 go. (GP's instruction). I'm going to try tapering DSNS in a week's time after staying on 12 mg for a month.

[DorsetLady PMRGCAuk volunteer in reply to Joan-E-D]

GPs - don't you just luv 'em!

Glad to hear your change of tablet taking time has worked out for you. Must admit it didn't suit me, but as we're always saying we're all different, and what's good for one is not for another!

Hopefully your GP will let you follow your own tapering plan in future! Good luck.

[PMRpro Ambassador in reply to Joan-E-D]

Good!!!!!