Steroid-based inhaler warning

[JumpJiving]

**Moderator note to anyone reading: if you have similar concerns please speak to a medical professional - don't stop your steroid inhaler or any other steroids if you're worried about adrenal insufficiency. It's dangerous for both adrenals and asthma.**

When I started on a steroid-based inhaler, the asthma nurse did not mention any possible danger from being on it. This last year, I've been fatigued, muscle aches, having cramp in my feet, all sorts of low-level, unexciting symptoms, certainly nothing my GP would pay any attention to whatsoever - even if I could get an appointment, I would just be told to rest (I'm constantly on the go).

Just as a routine MOT on my body (and my GP hates me doing this - she considers anybody doing this to have "health anxiety", i.e. hypochondria) I did a private blood test last week (Ultimate Performance Blood Test from MediChecks). The blood was drawn at my local NHS hospital, the tests done in an accredited laboratory. It came back with some scary results, to the extent that MediChecks own doctor tried phoning me and MediChecks followed-up with an email to ensure I recognised the significance of the results. Turns out that I have adrenal insufficiency. After my GP practice trying to fob me off initially, they repeated the tests (they really don't trust anything done independently of them) wasting another day. When the results came back, they got into a bit of a panic as they realised the significance. I could literally go into adrenal crisis at any moment, which is potentially fatal. Three trips to hospital later (one to A&E, two to Same Day Emergency Care), I am now on hydrocortisone to keep me safe whilst they work out the cause. The suspicion, for both me and the chap sitting opposite me in the waiting area at Same Day Emergency Care, is that the steroid-based asthma inhaler that we both use has suppressed our adrenal function (possibly both pituitary and adrenal glands). It's not certain yet, it's very rare, the hospital says they've never seen it before despite two of us being there at the same time on the same day, but it can happen and they suspect it's happened to both of us. Since being on the steroid-based inhaler, my GP practice has not tested my cortisol level once (nor the other bits that can be affected). So, the purpose of this post is to recommend to anybody who uses a steroid-based preventer inhaler, ensure that your routine follow-ups include blood tests for adrenal insufficiency, and if your GP won't do them, get them done elsewhere. That routine test that I did may well have saved my life this last week.

[teddyd]

Can ask were you both on the same inhaler? What inhaler was it?

[JumpJiving in reply to teddyd]

Yes, same inhaler although different doses. Seretide

[Chip_y2kuk]

Steroid inhalers reduce your body's cortisol, mine barely reads and ive had an SST and been under the endocrine team who ran tests (as a good measure) but said like you have been Told its the steroid inhaler.... I now have a steroid dependant/treatment card in my wallet all the time but its only likely to cause me problems if I can't keep putting steroids in my system (as my adrenal glands may not wake up and would certainly need time to do so)

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

I'm surprised they told you it was from the inhaler - if I remember correctly from other posts, haven't you had quite a lot of courses of oral steroids over the years? If I'm right about that for you, I would have thought they couldn't point to the inhalers as the cause in your case, since there's a much higher risk of adrenal suppression/insufficiency from oral steroids.

I had AI from repeated/long courses of oral steroids but it seems to have recovered now - I'm still on high dose inhaled but for me, that's not been an issue. I managed multiple short courses and coming off them ok then one time it was just too much and I had to stay on 5mg until the short synacthen test (SST).

[Chip_y2kuk in reply to Lysistrata]

Yes and I like you was surprised... I even pointed out I'd had copious amounts of prednisolone over the years and surely they were more likely to be the problem? But was told that wasn't the case and as I did 'stimulate' during the SST "my adrenals, could produce cortisol under stress, so they are functioning" but my starting cortisol at 9am of a morning was 65 (they tell me it should be nearer 650)

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Huh that's weird, I don't really see how that proves it's the inhalers in your case (Chip_y2kuk in case it's not clear!). And seems like an odd thing to insist on. I'm not really sure they can be quite so definite on the cause with someone who has had a lot of oral steroids as well - did they explain why the SST results were supposedly from inhaled vs oral?

I had a different pattern - too low but not super low but I didn't increase during the tests. So I was producing something but it wasn't capable of rising to the occasion! I have to say the endo team were much better than the asthma team for me (on one occasion they were better at understanding my asthma than the asthma team).

[Chip_y2kuk in reply to Lysistrata]

Me neither but it was an internal referral from the second respiratory team I saw to the endocrine team, they ran the tests and weren't really interested (the impression I got was they owed respiratory a few favours so where returning them)

but fact remains my starting cortisol was "low" and I stimulated during the SST to an acceptable number .... and they discharged me back to respiratory with no further action required.

[Lysistrata Administrator Community Ambassador]

Sorry to hear about your experience JumpJiving. It definitely is possible, though much less common, to develop adrenal insufficiency from just inhaled steroids ie no oral steroids.

If anyone reading this is alarmed about their treatment, I would say it's worth remembering that:

a) you're much more likely to develop adrenal insufficiency from *oral* steroids which you're more likely to need repeated courses of if asthma is poorly controlled because of a lack of inhaled steroids and

b) it is definitely common to have poorly controlled asthma with potentially serious or fatal events if you aren't taking inhaled steroids at all. Even if you think your asthma is mild or you don't have many symptoms, as the inflammation doesn't always give you that many symptoms necessarily.

JumpJiving - I do want to say I'm definitely not discounting your experience here, or saying people shouldn't know about the possibility or suggesting you're telling people not to take their steroid inhalers. I just wanted to remind people of the points above in case they get overly concerned and are worried about taking their steroid inhalers.

Obviously people should be aware of similar symptoms and get them checked out if they occur.

[JumpJiving in reply to Lysistrata]

Completely agree - I’m not suggest anybody stop using their inhaler, just to ensure their adrenal function is monitored regularly so that a serious drop in cortisol is addressed rather than left unaddressed

[strongmouse in reply to JumpJiving]

Thanks for the information. Do you mind my asking how long you've been on steroid inhalers?

[Nanto4]

This is so interesting , i have been under the weather for months, bad sleep, headaches, respiratory problems, finally got seen by a london severe asthma unit and a cortisol test done ,amongst loads of others ,1st i have ever had and it came back at 58 ,which i am assuming is part of the cause, i have been on steroid inhalers for 33 years and about to do biologics as my asthma has been uncontrolled all this year.,My GP has,put me on 9 short courses of prednisone since March even though they keep saying you cant keep having these .

[Chip_y2kuk in reply to Nanto4]

Headaches can also be low folic..... I also have low folic and my only symptoms are the mother of all headaches and more tired than normal... I just have to remember to keep eating folic rich foods (spinach and eggs)

[_Badger_]

This is really interesting, when I was taking Relvar it said on the label that I should carry a steroid card. I then had to change inhaler and had the dose doubled. The new one however mentioned nothing about it and I've had several courses of pred since then. I wonder if different steroids carry more of a risk than others hence the warning on one inhaler and not on another

[Mandevilla in reply to _Badger_]

I know my Relvar came with so many warnings about potential side effects that I felt quite scared to take it! But decided on reflection that not being able to breath was even scarier! It's not ideal having to take anything that has side effects, but I try to remember to balance my worries about side effects against the risks of untreated asthma. When the asthma is behaving itself, it's easy to feel as if I don't need steroid inhalers with pesky side effects - but I remind myself that I'm only feeling this good because I'm taking that inhaler regularly.

[Pipsqueak77 in reply to _Badger_]

Hi Badger

You are correct… some of the steroids in inhalers are more potent than others and some are also more biologically available so they are adsorbed quicker/better.

The Fluticasone in Relvar is more potent than in other inhalers and at a lesser dose.

😊👍

[Thomas45]

That's really interesting. I received a letter from my GP practice some time ago, which I didn't read immediately. I came across it when I was tidying up, and it was a Steroid card, and a letter about the need of clinicians and hospitals to continue with my inhalers when in hospital for any condition, as stopping my steroid inhaler, (Duoresp Spiromax 320/9), could lead to adrenal insufficiency which can be life threatening. I've used steroid inhalers for decades, and only occasionally have week-long 40mg a day courses of prednisolone. Before the Pandemic I had about three courses a year. Since the Pandemic I've only had one bad low respiratory infection requiring oral steroids.

My GP practice are, thankfully, proactive as well as reactive.