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Cortisol levels

Angelgoth profile image
7 Replies

Hi

I have been on long term pred for almost a year and before that had many long courses. I was just wondering if anyone else on long term pred has their cortisol levels checked. I had mine checked last october but I wasn't on long term pred then and my levels were fine, also my cons hasn't mentioned anything. I am on a maintenence of 10mg per day then increase if have a flare up.

Not sure if checking my levels again is something I should be mentioning to cons

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Angelgoth profile image
Angelgoth
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floating_ profile image
floating_

You could do, it's worth keeping an eye on. Are you on Calcium and Vitamin D? It's important to look after the bones as well!

Angelgoth profile image
Angelgoth in reply to floating_

I take calcichew and alendronic acid as also have osteopenia

It’s fine whilst you’re on the pred, but don’t let anyone take you off it without doing a Short Synacthen Test. This stimulates your adrenal glands to check they’re still capable of producing cortisol. If not, and you stop the pred, you could have an adrenal crisis, which is a medical emergency. If the SST shows your adrenal function to be poor, you can go onto cortisol replacement therapy, which works just fine for me.

Angelgoth profile image
Angelgoth in reply to

Hi thanks for your reply, I am currently being assessed for biological treatments and my cons seems happy for me to stay on pred. can they do the synathen test while on pred?

in reply to Angelgoth

It’s a while since I had one done, but yes they just get you in early (8-8.30 I think), do the test, which takes about 30mins, & then you take your pred AFTER the test.

If you are shown to have adrenal insufficiency (or they seem to call it secondary Addison’s these days), they’ll refer you to an endocrinologist & be taught how to manage it. It’s not difficult

hilary39 profile image
hilary39

Definitely keep an eye on it!! It's great you're thinking about this. I developed adrenal insufficiency from too much pred and am now on daily hydrocortisone for life :/ I wish I'd known to be tracking my cortisol! Talk to your doctor and if they seem dismissive, see an endocrinologist as they are very clued in to how prednisone can disrupt your adrenal system.

Angelgoth profile image
Angelgoth

so many people seem to develop adrenal insufficiency from long and or high doses frequency I'm just worried about it happening to me as it seems a difficult condition to live with

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