Steroid Induced Adrenal Insufficiency

[MaxRuby2020]

Hello,

I am wondering what experiences anyone has had with the above. DS was prescribed very high doses at a young age for 12 months for a chronic condition, and adrenals currently showing no signs of recovery as yet 18 months later.

Interested in any similar experiences, and how long did it take before signs of recovery, and to fully recover?

Thanks

Hi I have this caused by asthma inhalers. Being very honest it’s extremely unlikely for someone to recover from it. There’s an excellent Facebook group with lots of help and support here -

www.facebook.com/groups/175948922471395/?ref=share

Thank you!

I’ve been really struggling to find examples of people’s experiences. He currently has a steroid inhaler which probably is not helping the recovery but very much needed.

Really appreciate the support group details.

The group is fantastic.

There are a few people in the group who have managed to wean off steroids completely over a period of many years tapering down very slowly to wake up their adrenals but it’s very rare that that happens (one of the group admins did just that over a 4 year period- not me, I’m stuck with severe adrenal insufficiency I don’t make any cortisol at all now so will be on them for life). It also depends if you can reduce the original cause - if your son needs the inhaler then the cortisol deficiency will continue, and that’s ok - inhalers are vital and shouldn’t be stopped if needed.

I had a useless endocrinologist try to make me stop taking my asthma inhalers to try to wake up my adrenals and I was so unwell l nearly died. I got a second opinion and now I manage it very well by just taking steroids and so on.

Good luck with it all. The worst part is the lack of knowledge in the medical profession but the group mentioned above is literally a life saver.

This is also very good -

www.addisonsdisease.org.uk/

Addison’s and adrenal insufficiency are effectively the same thing - low / no cortisol. They have different causes (secondary ai is caused by pituitary or steroid issues meaning the adrenals don’t receive the signal to do anything, Addisons is a lack of function of the adrenals themselves. Hope that makes sense! Treatment is the same, same for emergencies too. Some people with Addison’s take an extra medication to manage blood pressure levels etc, not everyone with secondary ai needs this - I just take hydrocortisone).

Thank you.

I am hoping that given a bit more time the adrenals will begin to wake, but appreciate from your note it’s rare.

Agree with you about lack of awareness in the medical profession, as we were not informed that this would be a potential consequence of the original treatment.

DS had this, the first we knew of it was when he collapsed with after a normal every day stomach bug. His was caused by high doses of inhaled steroid, he eventually out grew it but I remember it being a scary time. He was 7 when he was diagnosed and now has no signs of it as an adult. DD was checked as she had been on even higher doses of inhaled and oral steroids than her brother had, she was borderline.

Good to hear that your DS outgrew it.

Was anything changed with his inhalers after his diagnosis to encourage the adrenals to wake up. Also from diagnosis to out growing it, how long did it take?

Also, is your DD still borderline and if not how long was it for her to get back to normal levels?

Sorry for all the questions but as you mention scary times and keen to understand the experience that others have had with the condition.

We’ve been told the inhaler dose, even with his adrenal insufficiency, is not contributing to it must admit I’m not so sure, but he does need them to avoid multiple visits to a&e each week especially in the autumn/winter seasons.