Advice Please

[Nanny71]

Good Morning All

I am currently down to 2 mg steroids . Pain free hooray!! My question is as my Dr says no need for test for Adrenal function at this time can I assume that mine are working ok.

[DorsetLady PMRGCAuk volunteer]

If you aren’t having any adrenal insufficiency symptoms then they are functioning to a degree, but it can take anything from 6 months to a year after finishing Pred for them to be working 100%.

Have you read the info in the FAQs?… and the test only tells you if they are capable of working, not how well.

healthunlocked.com/pmrgcauk...

[Nanny71 in reply to DorsetLady]

Thank you will do 🌺🌺

[PMRpro Ambassador]

Is that the GP? I would ask for a basal cortisol to be done, no need for the synacthen test at the hospital but knowing what your adrenals are doing would be a nice baseline to follow over time. It can take a lot longer than many doctors think or expect for reliable function to return. Basal cortisol can be done on a sample taken any time between 9am and 1pm after having no taken pred in the previous 24 hours (i.e not since yesterday morning's dose and take today's after the sample is taken). A level under 100 is adrenal insufficiiency, over 450 is normal You can judge progress by your position on the range.

There is one lady on the forum who was down to 2mg and felt fine - a study at Imperial in London says 2mg is loads for day to day functioning, Her rheumy was one who always checked - and it was found she had absolutely no reserve function so might have been in trouble if under stress, illness or trauma.

[Janstr in reply to PMRpro]

At what dose should we ask for a basal cortisol test. I’m currently on 3 mg

[PMRpro Ambassador in reply to Janstr]

You could ask now. You can ask at any dose under about 5 - it is cheap, unlike a synacthen test, and that would give a baseline so you can see how it progresses. Or not ...

[Janstr in reply to PMRpro]

Thankyou. I will ask when I next go to my GP

[Nanny71]

Thanks for your reply.It was my GP who I must admit has refused everything so far. No Dexa scan as in his words we just presume everyone on steroids has Osteoporosis!!I perhaps need to be a bit more forceful. Will request blood test again and perhaps show him your advice 🌺🌺🌺

[DorsetLady PMRGCAuk volunteer in reply to Nanny71]

No Dexa scan as in his words we just presume everyone on steroids has Osteoporosis!!

Rubbish! many people of our age may have osteopenia, but it never develops into osteoporosis- with or without steroids….and how do you know the risk if you don’t get offered a DEXA…

[PMRpro Ambassador in reply to Nanny71]

I've been on pred 14 years, at 12 years I had moderate osteopenia, not a lot worse than the baseline dexascan after 2 months of pred. I took 4 tablets of alendronic acid before stopping until the dexascan, only calcium and vit D. And then you need scans at intervals to know you aren't losing bone density. If they did the dexas they would KNOW their assumption is wrong.

[borednow in reply to Nanny71]

Well, in response to your GP I think you need to put your foot down with a firm hand (as my dear old Dad used to say). What a silly man

[DorsetLady PMRGCAuk volunteer in reply to borednow]

common saying ..😊..

[PMRpro Ambassador in reply to Nanny71]

Forgot to say, I know two ladies, one in her mid 80s, the other 90 or thereabout. Both were on steroids for some years, the first had GCA so high doses, the second had PMR so lower but twice. Both have bone densities of above 95%.

[Nanny71 in reply to PMRpro]

Thanks these GPs are so wrong sometimes 🌺🌺

[Suffererc in reply to Nanny71]

Gives you so much confidence having a GP like that 😊