Sudden energy boost

[Gaz227]

Hi All , just a thought , I struggled to reduce from 7mg , tried 2 or 3 times just to reduce half a Mg . now I have finally got there I seem to be full of energy, I remember reading this is the level when your adrenal system starts to fire up again could that be the reason I seem to have more energy than longer then I can remember ? Just a thought .

[DorsetLady PMRGCAuk volunteer]

Hi Gaz227,

Could be that your adrenal glands are on the go! If so, that's good. But please don't get carried away, and think you're superman - again. You still need to be a bit cautious, but once you get rid of that consistent fatigue it certainly does make you feel a lot better overall.

Well done - long may it continue!

[Gaz227 in reply to DorsetLady]

Thanks Dorset lady , fingers crossed its a step in the right direction , still probably a long way to go to get off the Pred

[Celtic PMRGCAuk volunteer]

Gaz, sounds like third time lucky! If at first you don't succeed.......! Always great to hear a good news story. As DL said just don't go overboard with overdoing things now - those adrenal glands have let you know they're getting back into action again but will still have some way to go before they get right back to normal. Stay well and I hope it continues to be smooth sailing for you now.

[Gaz227 in reply to Celtic]

Thanks Celtic staying positive 😀👍

[markbenjamin57]

Hello Gaz / all on this thread.

If it helps:

I'm having a similar experience, now feeling more energetic at 7-ish mgpd after much deathly fatigue when trying to creep downwards from that, and at a previous threshold of 10-ish mgpd some months ago. I wouldn't say that I'm anywhere near my 'normal' self, but I feel generally more lively and stable symptoms-wise than for a long time. Hoorah.. but I'm sticking on 7-ish for a while since it's slowly-does-it from here (as per DSNS) to give the adrenals a fighting chance.

As a few of you say, even when we (want to?) feel like we're 'nearly off' of the preds and / or feeling better, this is where not over-doing it and still knowing our limitations is so important - or it's back to square one.

MB

[Gaz227 in reply to markbenjamin57]

Thanks , sounds like good advise , hare and the tortoise comes to mind , slowly is sometimes better 👍

[lesley2015]

Hi gaz227

So pleased you are doing well - I am still at 13mg but creeping down. I had one good day last week and got a little over excited thinking yay - I have turned a corner - but once again now feeling exhausted, but nice to remember what feeling almost normal is like

Have some of the pred side effects gone (assuming like most you may have had some) ?

[Gaz227]

Had extreme fatigue for so long , when you talk to people about fatigue I don't think they release just how debilitating it is unless they have or had our condition or similar immune problem . Currently even my hip pain has reduced , but I have a feeling as soon as I reduce again it will be back with a vengeance , but we keep soldiering on 😀

[bmerten]

Great news! Did you reduce by half a mg each time? And when did your energy come back--at which dosage? I've been trying to get below 7mg and have not been successful--so far. Betty

[Gaz227 in reply to bmerten]

Hi Betty , about 5 days ago I noticed I wasn't sleeping much yet wasn't tired , although tired after exercise I was training a lot longer than I have been able to for some time. It took me 3 attempts to go from 7mg to 6.5 , I'm not counting my chickens just yet but fingers crossed hoping that was the he magic number for me that switched on my adrenal glands , remember everyone is different but I am told that is a round about number that it happens 👍 Hope that's useful and good luck 😀☘

[HeronNS in reply to Gaz227]

I have found that every reduction has brought a new round of fatigue. But after hanging about 4 mg for several weeks I've suddenly been able to start the taper to 3.5 and it seems to be going very well. PMR niggles less than they've ever been, and I feel more myself and slightly more energetic. Have got rather accustomed to not doing much of anything, however, so think I'll carry on in this vein.... 😎😉

[bmerten in reply to Gaz227]

Thanks, yes, I think I'll ask my doc about trying the half mg.

[PMRpro Ambassador in reply to bmerten]

As Heron has said - the return of adrenal function doesn't happen like flicking a light switch, it returns slowly as the pred dose reduces and more cortisol, the body's own corticosteroid is required to top up the level. The slower with smaller steps you reduce the easier the body finds it - it struggles to cope with big changes. About 7mg is the point at which this is needed - so slower is definitely better.

[Gaz227 in reply to PMRpro]

Thanks PMRpro good advise as usual , I have to say I went a bit mad exercising last couple of days and paid with my hip pain , pain easing off today lesson learnt . 👍