Adrenal insufficiency from long term prednisolone

[KateMoss]

Hello, I am brittle asthmatic (Severe / difficult to manage etc) and have been on prednisolone in various doses for well over 20 years.

Recently, it transpired, after a cortisol test that my levels are less than 11 (Usual levels should be 140-690) - I found out the results from my Rheumatologist 6 weeks later who was quite shocked that I didn't know and made me increase my steroids asap.

I have always tried to be on the lowest dose possible and have been pushed to go as low as I can by my asthma cons, But I have been suffering from what I now know as adrenal insufficiency! GP surgery had test redone and was the same. They have been great and have managed to get an app with Endocrinology next month.

I have chatted with a lot of friends who have been through this and are now on hydrocortisone to replace the lack of cortisol and also have emergency HC in case of emergency (such as an Addisononian crisis)

Hydrocortisone has less of the side effects of prednisolone so I would prefer to transfer to HC and keep pred for asthma flare ups.

Any extra advice, please let me know,

Thank you

Kate

[TuckBox2]

Hi Kate,

I am going through the same at the moment, I had a bad time with diverticulitis over Easter weekend and when I had a CT scan to check the diverticulitis they found a tumour on one of my adrenal glands, they made an appointment with endrocrinology. They have said the tumour is benign, I have had a couple of tests last week to see if the adrenal glands are still working, over working etc. etc. I am just waiting on the results now.

I was diagnosed with asthma 40+ years ago and was quite bad the last 20 years having 4 - 5 hospital admissions a year and at times having low dose prednisolone for 6 to 8 months to try and help .

I am now on Mepolizumab (Nucala) injections which has helped me tremendously, as I have not had any hospital admissions (for asthma) for over 2 years now, no preds either. I am still waiting to see rheumatology clinic next month.

[hilary39 in reply to TuckBox2]

So good to hear nucala has helped you! Do you happen to know what your initial eosinophil count was? I’m on xolair but having some side effects and debating switching to nucala- my eosinophil count is around 200 so not that high

[TuckBox2 in reply to hilary39]

Hi Hilary,

I was on Xolair for 4 years, the 1st couple of years it did help, the first thing was I could stop the 4x daily nebulisers and a few other meds. Then after a bout of pneumonia I was going on downward spiral back to where I was before I started, that was why they swapped me over to Nucala which has been a real help, I have got some normality back in my life. I only get breathless if someone with strong perfumes comes close, or there are strong smells of cleaning products when I was in the office and the cleaners were around and only going up about 3 floors of stairs.

[hilary39]

Hey Kate, I am with you 100%!! I’ve had asthma my whole life but it has significantly worsened the past few years and I’ve been on and off prednisone constantly. This past winter I got into a particularly bad flare (still not out of it, I think I’m allergic to something in our building :/ ) and I was on high doses of prednisone on and off for months.

After I tapered off a course in May, I went into an adrenal crisis which was terrifying. I was throwing up nonstop, dizzy, had a migraine and generally felt very sick and had to go to the hospital. I had to take 100 mg of hydrocortisone initially and 20 mg every day since moving to 10 mg daily soon. My cortisol at 8 am has been anywhere from 2-16 the past few weeks.

It’s such a scary side effect from prednisone! Why don’t more doctors talk about this more with us severe asthmatics when we are on and off prednisone constantly?!

Definitely take hydrocortisone ASAP, it’s the only thing that gets the adrenal glands up and running like normal and for me there are no side effects aside from a little heartburn (the prednisone gives me a ton of side effects).

So sorry to hear this is going on with you but I emphasize!

[MikeWhite in reply to hilary39]

Been on pred long term up to 60mg per day when my asthma has been at its worse.

Now have adrenal suppression, under active thyroid, low testosterone, high bp and steroid induced diabetes.

Take 15mg hydrocortisone am, 7.5 lunchtime and 10mg late afternoon.

You have to adhere to sick day rules and make sure dentists and surgeons know about your condition before treatment or surgery - had two knee replacements which required additional cortisone injections pre and post.

Also have IV cortisone for emergencies. Addisons.org is a really useful site.

On lots of meds but situation could be worse.

Been on xolair now which has really helped, but still had 3 or 4 Hospital admissions via resus each winter following chest infections. Now on prophylactic antibiotic which has stopped the chest infections so no hosp admissions this winter.

When I was tested for adrenal insufficiency my cortisone blood counts did not increase at all when the adrenals were attempted to be stimulated via a drug which mimics pituitary gland chemicals.

Could be worse - keep taking meds and does not really affect me,

Pred is a necessary evil for severe asthmatics but it has kept me alive

Try not to worry too much

Mike

[whobejack]

Hi Kate,

As I discovered 2 years ago, our asthma docs are very bad at the whole adrenal suppression implications part of asthma management. After discovering that my adrenals had flat-lined (partly from using the smart system with fostair), my hospital said "stay on 10mg pred until we review in 6 months", and my asthma cons said "Oh, OK". Muppets.

In the end I insisted on being referred to an adrenal specialist at another hospital as I knew (form research) I should have been switched to hydrocortisone, and that the longer I was on the pred the less chance there was of recovery.

It took about 3 months but in the end I got them working again by reducing the dose gradually. The adrenal specialist said come back if it happens again, we will help, it's very common. What I learned? Make sure you are under someone who understands how it works. If they haven't already put you on hydrocortisone, they don't know what they are doing.