When will my adrenals come home?

[Slowday]

It's now over two months since I took my last Prednisolone in November. I had a synacthen test a few weeks after that and everything was OK. But there's no sign of the adrenal twins returning. I wait every day at the window for them to come walking down the driveway but alas they are nowhere to be seen. A few questions to those who have been here before. How long can it possibly take for me to feel rid of the tiredness and aches and pains of steroid withdrawal? Does it come back all at once or is it a very gradual process and how will I recognise it if and when it does start?

[cranberryt]

I read a study that said it can take as long as you were on steroids for the body to restart the adrenals. So it it was a year of steroids, expect another year for them to fully kick back in. However, fatigue and aches and pains are also part of PMR so I would ask how you know the PMR is gone? Maybe it’s not and you still need a low dose of prednisone to function?

[PMRpro Ambassador]

They must be hiding in the house because without them you would be very unwell after this time. The synacthen test only shows that they are there and doing their homework when kicked and observed - it doesn't show whether they are doing it reliably when you aren't kicking them. The production of cortisol relies on a very complex feedback system (the HPA axis, (hypothalamus, pituitary, adrenals) and any one organ or hormone not being quite as it should be can upset the supply and cause wobbles.

However, it is thought that it takes up to a year for adrenal function to settle down to anything like normal. And bear in mind you are 3 years older - believe me, that alone can make a difference however fit you were previously!

[DorsetLady PMRGCAuk volunteer]

As discussed many times on here, and again today…see this -

healthunlocked.com/pmrgcauk...

It a can take up to a year for your whole system to get back to ‘normal’ (whatever that maybe….your normal is not the same as mine, nor anybody else’s).

Aches and pains are al part of life- so why do you think ‘of steroid withdrawal? …you must also remember that for the majority of you time on Pred many of those aches and pains have been masked….and you are older, and your body may well have deteriorated more than you realise.

Your Synacthen test didn’t prove how well adrenals were working, just capable of working…different thing…and it’s not like flicking a switch and it’s all there in one go….much more like the first batch of long life bulbs produced a few years, takes time to get up the maximum achievable.

Be patient….again 😉

[Longtimer]

Hate to say i t, but think they have gone on holiday with mine.....just a waiting game it seems before they return!...

[HeronNS]

As steroid withdrawal only lasts a few days I would be concerned that the aches and pains are more significant than that. Hopefully not. And as PMRpro says, three years of aging can make a big difference.

And patience, yes. We had to learn patience when we started tapering pred. This is Patience 2.0!

[Slowday]

Thank you all for your sixpence worths. I forgot to say I had a stroke about 15 months after GCA and I have now been diagnosed with FND (I know I'm an acronym disaster) stands for Functional Neurological Disorder where the brain plays tricks on you and gives you the symptoms of various neurolical issues but you don't actually have them. Very interesting I hear you say but it leaves me numb down the whole right side and not very mobile. So a bit of a problem exercising or even walking very much. Maybe I'll phone Popeye for some tins of his spinach.

[123mossie in reply to Slowday]

😊

[Thelmarina in reply to Slowday]

I love your humour. Pred or lack of it has not robbed you of that! 👍😅x

[Maltesemama in reply to Thelmarina]

My Doc has me taking 2 1/2 mg of pred daily. Apparently this takes the place of stogy adrenals. Been doing this about a year and have energy Just a thought for you. Best of luck

[Liby57]

Interesting question because I am at the same stage. Stopped Pred Nov, had Synacthen test last week so waiting for the results. I still have weak arms and legs so wondering when and if I will ever get back to where I was pre Pred and able to return to previous fitness levels eg daily swim and 5k walks?

[DorsetLady PMRGCAuk volunteer in reply to Liby57]

This has been discussed in another post as well -healthunlocked.com/pmrgcauk...

You will get back to previous fitness levels, but it doesn’t happen overnight -you need to build up your strength again. Probably slower that you’d like, but you must also remember you are a least a couple years (if not more) older.

[Liby57 in reply to DorsetLady]

I’m very grateful for the progress I have made since starting PMR because the onset was the most terrifying experience I have had to endure. I have weakness in my arms especially when lifting up above my head or stretching to reach things high up. I feel I need to drop my arms down straight away. No pain, just no strength.

[DorsetLady PMRGCAuk volunteer in reply to Liby57]

Maybe see a physio then , if you can, to get some specialised exercise.

Following shoulder replacement - just before first Covid lockdown which led to no follow up physio - left my arm not as good as it should be.

I did as much as I could following online exercises, but wasn’t right, so 3 months ago I paid for physio to try and improve things.

Problem seemed to be pectoral muscle not recovered as well as others - so intensive work on that…getting there SLOWLY!

[Liby57 in reply to DorsetLady]

Apparently Prednisolone induced myopathy is very common but can be either mild or severe.

Depending on the severity it is reversible but it can take up to a year to recover. Aerobics and yoga is recommended so I’ll give that a go while I wait for physio as I think that will be a long wait.

[DorsetLady PMRGCAuk volunteer in reply to Liby57]

I started Pilates whilst still on Pred - found that very good - still going 5 years years after finishing meds..:and 3 joint replacements !

[PMRpro Ambassador in reply to Liby57]

It is said it is very common - but there don't seem to have been many people on the forums who say they have suffered from it. I had it and it developed very quickly after I was switched to methyl prednisolone. I had had no problem at all with prednisolone previously. After being switched to prednisone my leg muscles recovered within about 6 months, just by walking more.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Me neither…..

[Liby57 in reply to PMRpro]

I’m hoping as the weather brightens, I’ll get out for more walks. Home working has come to an end and I’m back in the office again so that will help as I have to climb 4 flights of stairs, they don’t have a lift !

[PMRpro Ambassador in reply to Liby57]

Rather you nor me!!!! I live on the second floor and I do do the stairs a lot - but I don't HAVE to!!!!