Will I know if/when adrenals start again?

[cribbager]

Many, many thanks for all the advice and experience I've learnt from this site which I found only after GP wanted a too fast reduction and I had what I now know to have been a flare. I have been SO lucky in my PMR journey so far (everything crossed!), and I'm down to three and a half mg. My question is 'will I know, without tests, whether my adrenals are restarting? And if they don't/can't will that have implications?'

[SnazzyD]

The simple answer is, you don’t feel rubbish. If they are working, you should just get on with your life without a second thought.

The not so simple answer is that sometimes you think all is well but then you’re not. So, you’re doing ok and you feel fine, but you then do something unusually strenuous, have some upset or are ill and suddenly you feel dreadful. The adrenal glands have been up to date to day functioning but not for a sudden big or sustained output. The tricky bit is working out if you feel bad because you’re ill or whatever so the “sick day rules” can help here when you are on low doses.

[cribbager in reply to SnazzyD]

Many thanks. So 'wait and see', and hope they'll be there to cope when the need arises

[PMRpro Ambassador]

Not really - if you feel OK most doctors tend to think that is fine but down to as little as 2mg/day the experts say that is plenty for normal day to day function, At that stage it is more interesting to know if the adrenals are starting to produce cortisol in a stress situation - illness for example or a shock like an accident or bereavement, In a healthy person, cortisol is produced at a higher level to help the body cope with the healing or emotional demands, but when on pred that may not happen and you may feel much more shaky than you expect. That is where the implications of the adrenals not starting up come in - you need cover during an operation for example and you may even need to stay on pred or hydrocortisone long term as replacement therapy. That is why you should carry a steroid card even for a year AFTER stopping pred altogether and a synacthen test tells you if the adrenals are capable of producing cortisol but not whether they are doing so reliably or under stress because there are a lot of factors that influence that.

[cribbager in reply to PMRpro]

Thank you so much - speedy and informative as ever. Really appreciate your input

[DorsetLady PMRGCAuk volunteer]

Bit more info about adrenals - and if they are working [albeit not 100%] you shouldn't get any issues, but as said you need to be aware that although they are okay on a day-by-day basis, anything that causes stress they may not be -

healthunlocked.com/pmrgcauk...

[cribbager in reply to DorsetLady]

Thank you - it's good to be prepared

[Hirwaen]

I now know with hindsight that the end of last summer was a s**t experience. Tried to be positive about reduction but always felt that I was making too much of how I generally felt.

Now I know that my adrenal glands were doing their best to get going and when I eventually had a Synthythen test, that they were doing their best to get started., I felta little bit better.

I am now passed that point of anxiety and at a dose of 3 mgs which seems to be ‘ok’ As long as I don’t overdo it. SO, in conclusion, stick with the plan and realise that none of this is easy. I am 7. years in and still haven’t got all the answers. Ia am just happy to be nearing the end of the road and accept that life is never going to be the same.

[cribbager]

Thanks Hirwaen. Nervous at every reduction but so far so good