At my wits end with my asthma

[BG2015]

Previously well controlled asthma from age 19 to 53. Last March/April I had radiotherapy for breast cancer & covid within a month of each other. My asthma has been out of control since. I can't even walk up and down the stairs without having to sit and get my breath back.

I've had 6 lots of prednisone in 8 months. My steroid inhaler was changed to Fostair -made no real difference.

In November I had an asthma attack and I was admitted to hospital for 3 days as my peak flow was so low. After the steroids kicked in I was allowed home. I began a 6 week weaned course of steroids.

I had an X-ray and CT scan, CT scan showed evidence of a healed infection, ground glass and a healed cracked rib (from coughing) they don't believe the radiotherapy is causing the breathlessness and coughing, but nobody is really sure as yet.

Just as I finished the steroids, in January I went for a lung function test. All my levels were low and within a few days after the steroids had completely left my system I was back to square one. I just wish the tests had been done that week as they would have seen how bad I was.

Now under the hospital respiratory team the asthma nurse I spoke to over the phone said I can't have anymore steroids and prescribed Spiriva Respimat inhaler. I've been taking it for 13 days now and my asthma is SO bad. I'm coughing so much, I'm struggling at work (I'm a teacher), I'm coughing up so much dark green phlegm and have a constant need to clear my throat.

I've rung the respiratory team twice and they rang me back during lessons so I couldn't answer my phone.

I can't go for a walk, I've cancelled my gym membership and at 54 feel like an old lady. I'm worn out and feel so down.

I was told if the Spiriva didn't work I would need biologics but how long that will take who knows. We're off to Mexico in 8 weeks (postponed from 2020) and I'm terrified of having an asthma attack over there.

It's a constant battle to be heard.

Didn't want to leave this sitting here unanswered. This sounds awful. Have they tested you for on-going infections? I hope you get some improvement soon.

Sorry to hear that you are still struggling. After one admission for asthma, I developed pseudomonas infection, and was coughing a lot of dark green stuff up. I think it might be worth sending off a sputum sample to check for infection - could you ask the respiratory team if this is worth doing?

Dear god OP
Dark green phlegm sounds like pneumonia, pleurisy, or bronchitis.

Definitely get a sputum sample done. A. Few years ago my asthma (I thought) flared up. And I was coughing non stop. Doctors couldn't work it out and nothing helped. A sample showed some rare bacteria in my windpipe rather than my lungs and targetted antibiotics got rid of it.

I think you need to forget about traveling anywhere in this state. You're obviously very ill. How long has this been going on for? If it's longer than a few months and likely to last some time I'd be claiming PIP and cutting down work hours to part time. You're not able to do everyday tasks like everyone else can so you should qualify. It'll be taking what little energy you do have just to carry out the basics, when you're breathing is that bad. So reduced work hours isn't unreasonable, your GP can sign you off for that I think. Maybe it's long covid with added complications?

I wonder if you have developed heart failure as a result of your radiotherapy and are reading the breathlessness as asthma?
You will need a cardiology referral.

I've been having regular heart scans because of my cancer treatment (I've been having Herceptin injections which ended just before Christmas) and my heart is fine. I'm going for another heart scan on the 17th so they are keeping an eye on it.

I did a sputum test last year which was clear but this is much worse, so thats maybe an idea.

I'm plodding on at work because I spent 9 boring months at home during chemo.

I'm going to ring my GP and see if I can actually see a doctor and not a nurse.

GP signed me off work for 2 weeks. I've got antibiotics and have got to take a sputum pot back in the morning. Also got to go for an X-ray this afternoon.

So glad I went to the doctors as I felt awful this morning.

I would push to get the biological because you are so poorly and your quality of life is being massively impacted and restricted.

has your heart been checked?

Yes see above
Regular heart echoes

I think once I've taken these antibiotics and I see how I am I definitely need to push for them!

I can't do my job and after having a year of cancer treatment I just want to get back to doing normal things!

Maybe you need a CT scan. I had one and then sputum tests, which take about six weeks to give a result and they showed NTM (a sort of non contagious TB).

Glad you've been tested @BG2015 and I hope the antibiotics work. (Some bacteria are resistant to the antibiotics usually given for chest infections, but the test should be able to tell you if that is your infection.)

I had a CT scan in December and going for another one on the 28th Feb

@BG2015 I had severe asthma and couldn't tolerate inhaled steroids to prevent attacks-I started biologics years ago-was the first to be prescribed xolair injections-the doctors didn't know what else to do with me. I started the shots after insurance approval and being sent to an allergist/pulmonologist. They drew my IG levels and calculated a lab level with my body weight and came up with the dosage-it was two injections every four weeks. I still needed a rescue inhaler and nebulizer but after twelve years of being on it I had to stop due to cancer treatment and my lung function tests are normal, I've been discharged from pulmonologist care and I can't recall last time I needed my rescue inhaler. The biological are expensive and there are risks involved but my quality of life has improved so much thanks to that Rx. I am in the US so I know the NIH is different but do consider the biologics

Thank you! I'll definitely be having the biologics if I can,I'm sick of being constantly breathless, it's been months now.

I've had to cancel my gym membership, my DP and I can't go walking anymore which we used to love. Even doing the shopping is hard. I'm so pig headed and stubborn I've battled on at work when really I should have taken time off.

Have you tried montelukast? Been a lifesaver for me!

@BG2015 I sincerely hope you can find relief

Yes been on Montelukast since last July.