Don't think I'll ever be able to breathe properly again

[BG2015]

I've been struggling with my asthma for months now.

Lost count of the number of steroids I've been on. Had CT scan, x rays, lung function tests and am now under the respiratory team. The CT scan spotted evidence of infection (now healed) OR possibly evidence of damage from radiotherapy that I had in March. They just don't know. There is also a nodule on my lung (not cancerous).

I was admitted to hospital in November for 3 days as my peak flow was 180. I finished a 6 week weaned course of steroids on the 28th December, and now 3 weeks later my peak flow is down to 210 and I can feel myself going down hill again.

I've got an appointment with my asthma nurse on Tuesday but am just fed up of struggling.

The steroids are just a short term fix. They were hoping that my new steroid inhaler (Fostair) would start to work but I've increased the dose myself and nothing is improving.

What can they offer me now?

@inloveandmarried do you take Spiriva before or after your inhaler? I've just been prescribed Spiriva handihaler, it's dry powder but hopefully just as effective for asthma.

I don’t mean to throw a spanner into the works but as someone with similar asthma to you that went on to develop adrenal insufficiency please have a google of Addisons / adrenal insufficiency (they are caused by different things but the treatment and emergency adrenal crisis rules and symptoms are the same) as if you’ve been on a lot of courses of steroids it’s very important to be aware of this. You should ask for an early morning cortisol blood test (although this may be higher than it might normally be if you’re taking pred as it stays quite a while in your system, masking the adrenal insufficiency) and if your cortisol is low you should be referred to endocrinology for more tests and be given an emergency injection kit. It’s very serious if untreated, it may be part of the reason you continue to be so unwell.

Thanks, I'm being monitored by the adult asthma team now. Just waiting to hear if I can have biologics as recent blood tests, spirometer readings and the continuous need for steroids mean I'm a good candidate.

Fingers crossed I'm eligible.

X-rays what were your symptoms. I have googled it before but I'm tired a lot of the time anyway

I've now been accepted onto a biologics injection trial.
It does what the steroids do but without the side effects. Just trying to find some research around it as it appears it doesn't work for everyone and can stop working for people after months/years.

It's called Mepolizumab. I start it on the 26th April. I'm just on my 8th course of Prednisone since June 2022.

Chest pains, weight loss, dizziness, fatigue, palpitations, all sorts. But the difficulty is symptoms tend to be different for different people. The key thing is if you’ve been on steroids for some time you should ask for an early morning (8-9am) cortisol blood test. That’s the only way to know what’s going on.

https://cks.nice.org.uk/topics/addisons-disease/diagnosis/investigations-suspected-adrenal-insufficiency/

If you are switching steroids for biologics you should be even more aware of adrenal crisis and adrenal insufficiency as if you do have it you’ll be at risk of crisis having stopped the steroids.

https://www.addisonsdisease.org.uk/emergency

adrenal crisis is the same in those with Addisons / secondary adrenal insufficiency. Although the primary cause is different medics use the terms interchangeably.

I'm sure they will advise me when I go for my appointment