How does prednisolone work

[Cobnut]

As somebody who has just had their second GCA 'birthday' and have at last reduced again down to 8mg, I'm just curious to know how pred works. If our adrenals start working at 4.30 in the morning and they are replaced by steroids at say 8.00am after breakfast, why is it that I feel most awake and alert when I go to bed. At the moment my fatigue kicks in at 11.00am when I try and nap. It used to be 3.00pm in the afternoon. I am on schedule to reduce down to 7.5mg in a weeks time and this time last year I did the same and had a flare up so I am nervous about it. I suppose we are all different when it comes to steroid side effects but I know that I have experienced most of them being left with glaucoma and diabetes and dodgy hip bones. Perhaps I should alter my day to doing my chores at night! Anyhow thanks for all the good advice I have been given in the past. I do at last feel as if I am winning.

[DorsetLady PMRGCAuk volunteer]

Hi Cobnut,

If you are on a dose of Pred above 7mg-ish your adrenals are probably not working at all, but having a nice rest. That's roughly the equivalent that your body would normally produce, so if your Pred is higher than that, then your body doesn't feel the need to produce its own cortisol.

Once you get to around that level, varies slightly - like all things, your adrenal glands need to wake up and start functioning again - some people find that a difficult, or very difficult time. It's similar to having a car in the garage for 2 years, and going out one day and trying to start it - it doesn't like it much, and takes a lot of coaxing.

Although it's not usually recommended you split your dose with GCA it might be worth trying - that way you might get a better 24hours balance. Or alternatively you could try taking it in one dose either at bedtime (although that may keep you awake during the night) or taking it around 2am, some find that helps. Sometimes it's a matter of experimenting.

However I would say the fatigue is down to you being around the level the adrenals need to kick back in, so it may be something you have to live with until they get up and running properly.

If you're down to 8mg and you've only(!) had GCA for 2 years then likelihood it's still quite active, so don't push your reductions too vigorously!

Mine lasted 5&half years - so you've got some way to go yet.

Take care.

[PMRpro Ambassador]

It isn't as simple as "adrenals being replaced" - they aren't really but I don't know how to explain it.

The pred is there to combat the inflammatory action of the cytokines which are shed about 4.30am - and that relieves the symptoms. That is the positive aspect of the pred. But it also signals to your body that there is enough of a steroid around - so not to produce more as too much is bad for you. It is the excess that causes the side effects of weight gain, skin and hair problems and so on. Normally the cortisol is produced soon after you wake up to prepare your body for the day ahead - but while taking pred above about 8mg that doesn't happen.

But it is possible your fatigue is a pred side effect (it is for some people) - or even more likely is that it is an effect of the real illness - an underlying autoimmune disorder that attacks your body and makes you feel flu-ey - plus the need for the adrenal glands to wake up.

I've heard quite a few people say they feel better later in the day when they get to this stage. I do I think - on 6mg I feel like death warmed up up in the morning - but by mid-afternoon I start to feel fairly human. And sorry - but I have NEVER had problems sleeping!

But one lady found that she felt deadly tired and wobbly a few hours after taking her pred which really wasn't helpful - so someone suggested trying taking the dose at night before bed - with the result she slept well at night and was able to have a wakeful day. Everyone is different...

[Suzanne457 in reply to PMRpro]

Your comments about our adrenal glands and their function was very interesting PMRpro ! I am taking approx 7 mg Pred now and feel like you do in the AM .....usually pretty awful and YES " death warmed over" sounds about right for me also. Coincidentally, as well , I DO feel much better in the afternoon and YES again.... much "more human" as you do. Soooo , what do YOU suggest is the biological reason for this occurrence ?? Is this feeling of poorly in AM and better in afternoon common amongst some PMRGCA folk?

Suzanne

[PMRpro Ambassador in reply to Suzanne457]

I think it is probably we are absolutely on the cusp of enough pred for the PMR and by afternoon a small amount of adrenal function is producing the afternoon pulse of cortisol that is fairly normal. Cortisol is also produced in response to exercise - and by then we are getting going and may even have been shopping - stress and exercise combined

[Suzanne457 in reply to PMRpro]

Thanks Pmrpro, for the good answer to my question ....certainly makes sense doesn't it !? I take my Meds (7mg) @ 4 in AM like many have suggested and I also take a very tiny amount @ breakfast hoping it will tide me over but ....as everyone says we are all "different". ((what fun) 🙁

Suzanne

[Hidden in reply to Suzanne457]

Suzanne-I too felt like 'death warmed up' but I was advised by PMRpro that as I was 81:16 stone/tall: active: and on 10 mg- that my glands were trying to wake up,-weight etc reduces the effect from 10 down to 5.It seems on all accounts to tick the boxes. so reduce the weight - cannot do a lot in that area and balance the activity.- sounds easy, but...................but one can only try- 'all the time you are moving you are not dead ! or 'all the time you are swimming you are not drowning! I tell myself .Just take it all easy and read our column ,some good people share their experience and knowledge -it makes life just that much easier -thank you all,John

[Suzanne457 in reply to Hidden]

Hi Scuba...it was nice to get your post and your view concerning this PMR journey that many of us are on together. It is especially helpful sharing our experiences with each other isn't it !?

Best Wishes to you,

Suzanne

[tinwoman in reply to PMRpro]

Thanks PMRpro this post is very helpful.

[Carol51]

M

Tx

[Hidden]

I had the same problem and now take my Pred 9pm. Can now cope with the mornings. Have PMR/GCA and on 30mg. Good luck.