Steroid dependent asthma

[Gizmo20]

Hi, I was just wondering if anyone had any experience of steroid dependent asthma and what it means ?

I have been on pred for over a year continuously and recently had a hospital admission at the Royal Brompton for a steroid wean. I got down to 10mg and will have another admission next year to reduce further if I can.

It has been a tough time as I have been getting continuous chest infections as well. I have now started Azithromycin. Long term Doxycycline made no difference.

I have seen an consultant who specialises in infections and he couldn’t find a reason for me getting so many chest infections apart from asthma will make me more suceptable.

I also don’t get usual symptoms so hospital admissions at my local hospital are a nightmare most of the time. I don’t always wheeze and if I do I don’t know as I can’t hear it. It can only be heard by the person listening to my chest. I usually get awful tightness with or without shortness of breath. Sats don’t always drop either. I find it hard to be taken seriously when I am there which means I avoid it as much as I can which I know is not the right thing to do.

[MikeWhite]

I had a similar issues with frequent chest infections resulting in 3 or 4 admissions each winter via resus, I’m also under the Brompton and have been on Azithromycin every Mon, Weds & Friday for a few years now which has really helped with only the very occasional admission, longterm pred has caused all sorts or issues with me & I advise to try & reduce & come off as soon as it is safe to do so, this needs to be done under medical supervision

I have the following due to high dose longterm pred usage…

Adrenal Suppression- both glands stopped working

Steroid induced diabetes

High blood pressure

Low testosterone

Low thyroid output

But pred kept me alive

I’m on Hydrocortisone now for life 3 times a day & biologicals as well as a raft of other medication for asthma & the other issues from pred but lead a pretty normal life now apart from getting breathless on stairs or carrying heavy shopping

take care & I wish you the best of luck

Mike

[bayness0]

I feel your pain, on steroids for the past 6 months. Most days are bad days. Let me know if they find anything to help.

[BiologicsB]

Hello Gizmo,

I have also been steroid dependent with severe eosinophilic asthma since the summer of 2019. I’ve regularly been on 4mg of Pred.

I started biologics treatment, starting with Mepolizumab. I was switched to Fasenra after a year on Mepo, and will my first year review of Fasenra in the second week on January. Some of the Multi Disciplinary Team are recommending a switch to Dupilumab but the decision will depend on the finance team.

I’ve been so frustrated and have found it scary too. Like you I’ve been telling the Drs till I’m literally blue in the face that I believe this to be something more than asthma. I can have a clear chest one minute and an hour later wheeezing and coughing and sats up & down like a yo-yo.

I’m currently recovering from a rather nasty bout of Pneumonia and after 6weeks was told by one Dr I have GERD… which is something so far down on my list of priorities.

I do hope that things improve for you in 2024,

[Ortho10]

Have you had a CT scan to discount any physical changes that might be going on.

Have you had plenty of Sputum samples taken?

I am a lifelong Asthmatic, surviving on 10mg a day, get tight chested if I try to cut down.

[Chip_y2kuk in reply to Ortho10]

I would second this but add it may be worth it being a "dynamic CT"

Gizmo20 you sound awfully like me:

Regular chest infections, every 2-3 months

Diagnosed asthmatic at 9 months old

Frequent breathlessness and cheet tightness, never really if ever wheeze

Doctors never really took me seriously but also couldn't explain the frequent chest infections as anything other than "asthma" and bad luck

SAT'S Are normally good even when a lung isn't filling with air properly

It took me 7 years of being a pain and getting told I was imagining it or I had cardiac asthma to push for a diagnosis and clarification