I’ve not posted for ages as I’ve been relatively stable since using benraliumab .. I had two failed attempts at both xolair and mepolizumab.. wasting nearly 3 years.
Anyway I’ve finally got down to 5mg of prednisone,it’s taken some 5 years and now I’ve a feeling my adrenal gland is shot, I go for a short synacthen test tomorrow in London ..
just wondering if anyone is in the same situation or has been diagnosed with Addison’s disease after years of prednisone.. and what to expect
Thanks in advance
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Mark-f
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Good to hear you've finally got a mAb that works, though annoying it took so long! Also congrats on getting down to the 5mg!
I have adrenal insufficiency from long term pred (in my case 15 months and 1 year long courses with lots of short courses in between). I have very weird asthma and I don't really respond to oral steroids, so my specialist clinic managed to get me off pred which I'm very grateful for - sadly the weirdness also means I'm not eligible for any mAbs! However, coming off pred also revealed that my adrenals weren't happy so now I have adrenal insufficiency (I will call it AI from now on because I'm as lazy as my useless adrenals ).
Also this is really long, apologies in advance, but I hope it’s useful!
Not sure how much you already know so apologies if I'm telling you things you're aware of, but usually with AI that results from steroid use it's technically not Addison's disease. AD is usually considered a type of primary AI (adrenals don't work to produce cortisol and some other hormones that regulate salts). With AI from steroids it's generally called secondary AI: the pituitary gland usually tells your adrenals to produce cortisol with a hormone called ACTH, but the pred basically told your pituitary gland that you already had cortisol, so it didn't bother to stimulate the adrenals to produce any more. When you stop the pred, your pituitary might not pick up the idea that it needs to produce ACTH again, and therefore the adrenals won't bother to produce cortisol. Sometimes the pituitary can start working again and sending ACTH (so you can sometimes recover from secondary AI, which you cannot from Addison's), but sometimes the adrenals just stop bothering and won't produce what they need even when stimulated with ACTH.
You may have already been told about the test, but it's basically looking to see what happens to your cortisol levels when they’re stimulated with ACTH, so they ask you to stop steroids for at least 24 hours beforehand (that includes any nasal sprays and also your steroid inhaler as well as pred. I would definitely talk to your team if there are any problems with stopping; my original instructions said try to stop steroid inhaler for 48 hours, I did 36 and had an admission shortly after which my endocrine nurse specialist felt might be related to missing 3 doses of Fostair, so she said not to stop for more than 24 hours which is fine for the test).
The test should be scheduled to start at 9am and you might feel a bit grim from stopping the steroids, so if you’re not very local to London and you can stay the night it might be an idea to do that – though not the end of the world if you can’t. Also a good idea to take something to do as you just sit there in the test for an hour plus.
A nurse will check your vital signs, put in a cannula, ask what steroid-containing meds you take and when you last had them. A doctor should then come and talk to you to explain the test and get your consent. The nurse will then take your blood at 9am (or as close to it as possible – cortisol levels vary throughout the day and are highest in the morning, and they use 8am or 9am reference ranges). Then you’ll get an injection of synacthen (artificial ACTH) and they will take blood half an hour later, then half an hour after that. Once that’s done the test is over and you can take all your drugs again – yay! So make sure to bring them to the test. I am the person who makes noises and ends up needing Ventolin every time I have this test (3 times now), because apparently lungs need those inhaled steroids even if I don’t do much with pred.
They’re looking to see what your baseline cortisol and ACTH levels are and what they are at 30 mins and 60 mins. If you can get above a certain level then most likely everything is fine. If you don’t, it means your adrenals aren’t producing the cortisol they should and you need to give them some. In my case my baseline in all three tests has been above the ‘concerning’ level but below the ‘ok’ level, but then doesn’t rise to the level it should at 30 and 60 minutes despite the ACTH (and my own ACTH levels are fine too), so I have secondary adrenal insufficiency.
If you do turn out to have secondary AI, you should be referred to an endocrine specialist – I see a fantastic nurse specialist who I wish I could clone as an asthma nurse lol. Most drs who are not endocrinologists appear to be deeply scared of it and will do all sorts of odd things so it’s worth educating yourself as you will probably need to guide non-endos if you are admitted to hospital. (My endo nurse clearly knows this and has provided me with various numbers for the endo dept ‘in case you have any trouble). Your asthma team should know the basics but they should not be trying to manage AI without endocrinology input, so push them if they don’t refer you.
For treatment: you can take pred but it’s more usual to take 20mg of hydrocortisone in divided doses (20mg hydrocortisone =5mg pred; hydro is less strong than pred and lasts less time, but is closer to your natural cortisol). The highest dose is in the morning as that’s when your natural cortisol production is highest and you need to try to replicate that - dose timing is important. I was prescribed it twice a day but do 10mg about 6.00am (I wake up earlier than I need to, take it then go to sleep again), 5mg at about 11.30am with my Phyllocontin and 5mg at 4pm. This was after I joined a Facebook group (Adrenal Diseases Self Help Group – lots of useful info if you’re on FB). I did start with one dose of 5mg pred in the morning but I was feeling absolutely dead by the evening on that, so the switch to hydro split doses really helped. Also as it’s a low dose and replacing your natural cortisol, you are unlikely to get the side effects as with high pred doses.
They tried seeing if I could reduce my dose to get my adrenals working again but it didn’t last so I’m back up to 20mg total.
You will also need to updose (usually double each dose) if you are ill , because illness is physiologically stressful for the body, and that uses cortisol you're not producing. There is guidance on this but you may find you need to tweak it eg it says you don’t need to for colds, but I find I often need to because colds trigger my asthma. In general my asthma absolutely gobbles cortisol so I will updose if it’s flaring even if not hospital level. You’ll also need it for some procedures (including major dentistry, surgery, and things like colonoscopy – never had any of those so far thankfully but I know I’d need to updose). Fevers also tend to mess with cortisol. The one time I have had an adrenal crisis so far was virus setting off asthma – I tripled what was my baseline dose then and it wasn’t enough. (Should it be relevant, and I hope it never is, official advice for COVID if you have AI is to quadruple the baseline dose). My endocrine nurse has commented that there is a bit of a lack of information for people who have steroid-induced AI in terms of how it works for illness, taking steroids for the asthma etc so be aware of that.
You should definitely ask whoever you see for advice on updosing and how to recognise low cortisol and crisis in yourself, though that may also be individual – for me low cortisol is feeling very very sluggish, hard to wake up, very slow brain, bit dizzy.
You will also need to ask for an emergency hydrocortisone injection and be shown how to use it (I was convinced I would not be able to, but I did it despite the fact that adrenal crisis can make you into an absolute idiot. I took far too long to work out I should use it - but I did it.) Always take the kit with you on trips.
Finally, you will need to get some kind of medical alert bracelet/tag that says you are steroid dependent and have AI - that doesn't have to be an expensive official one, I have a bangle from Amazon which does the job where I told them what to engrave. The Pituitary Foundation also has useful resources and advice: pituitary.org.uk/informatio...
I’ll stop now as this is already a huge essay and hopefully you might not have AI so I don’t want to go into all the treatment details – but if you do and still have questions, or have questions now, please feel free to ask. If you got all the way to the end well done and I hope it was helpful! 😊
Lysistrata's post is very excellent and I don't have anything to add. She captured it all!!
I developed AI from long-term prednisone use last year. It's frustrating but managable. It's important to take it very seriously and to always have extra medicine and your injection with you. I keep a packet of ten 10 mg pills of HC in my wallet. I got a cute medical ID bracelet from Lauren's Hope that looks like jewelry.
Let us know what you hear after the test. Take good care!
Thanks for adding that Hilary - I should have said I also keep spare hydro pills on me (and I admit don't give them *all* up in hospital just in case - they can be very slow/unhelpful sometimes).
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