Cortisol saliva test whilst on Prednisolone

[Everdean]

I have been on Prednisolone for many years and with my rheumatologist's advice I am

Now trying to come off them. However after reducing from 10 mg to 5, I am struggling to get any lower. I would like to pay to have a cortisol saliva test to see hat state my adrenals are in, but wondering if it would be any use if I can't come off the steroids to do it. Any advice please?

Thank you.

[SeasideSusie Remembering]

Everdean

I always use Regenerus for saliva cortisol/DHEA test, another recommended one is Genova Diagnostics (avoid Medichecks, Blue Horizon or any saliva test that tests cortisol only with no DHEA).

Regenerus instructions contain this:

Cortisol/Glucocorticoid Supplementation

Consult with your provider for instruction if you are taking a cortisol supplement for adrenal support (or any other glucocorticoid for medical reasons. Note: certain medications, including hydrocortisone creams and asthma inhalers, contain cortisol.

To evaluate your natural cortisol production, it is recommended to stop using cortisol containing procucts 5 days prior to sample collection. Consult with your provider prior to stopping cortisol containing medication(s).

Maybe your rheumatologist can advise?

[humanbean in reply to SeasideSusie]

I'm actually rather disturbed by that advice from Regenerus. For people with Adrenal Insufficiency who rely on cortisol substitutes to stay alive I think the wording of the warning needs to be much stronger and much more carefully written to make it clear that they must not, under any circumstances, come off their treatment for it.

[Everdean in reply to humanbean]

Yes it's scary. THANKYOU for replying humanbean

[Hidden]

To be honest it's pointless testing your cortisol levels while you are still on Prednisolone as it won't give a true reflection of the state of your adrenal glands. I think you need to ask to be referred to an Endocrinologist for better support as you try to wean off the Pred. If you have been on them for many years it is highly likely that your adrenal glands have given up producing cortisol as it hasn't needed to because you've been getting it with the Pred. As I'm sure you know tapering has t be done really slowly to reduce the side effects on the body of lower cortisol levels, it's also to try to kick start your adrenal glands to start producing again. I needed to go on steroids (Hydrocortisone) following removal of a pituitary tumour which was causing my body to produce too much cortisol, so following the surgery my body refused to make cortisol again so my adrenal glands have packed up & I'm not steroid dependent for life. If you are on Facebook then it's worth joining the UK Addison's & AI info & support group. There are several members who have been on long term pred & trying to reduce it, so they would be able to help you as you try to taper. Good luck - it's not easy!

[Everdean in reply to Hidden]

THANKYOU I will look on that face book page.

[Hidden in reply to Everdean]

There is a new article in the Endocrinology magazine which talks about patients with rheumatoid disease & on long term steroids, I thought you might be interested in. onlinelibrary.wiley.com/doi...

[Everdean in reply to Hidden]

Thankyou