No improvements...

So I’m on month 5 of a very rocky road with asthma. At least that’s what it’s been diagnosed as. On my 3rd preventative inhaler after the previous 2 weren’t cutting it. So I’ve now been put on sereflo. I’m using my blue inhaler everyday without fail, multiple times. I’m on a Nasal spray for PND, also . The blue inhaler mostly helps when I have tightness and wheezing, which is a positive for full on attacks. New symptoms this week include just general breathlesness. Going upstairs etc. I lift weights at home and the nature of breathing required for lifting suits where I am at. I ran a marathon in October but I can’t manage even 2 miles anymore . There has been literally no significant improvement and with this new breathlessness even doing very little, it’s just another symptom to add to the equation. I phone the doctor and all I get is ‘well, you’ve got to work out your triggers’ or, ‘well you don’t sound wheezy’. It’s effecting my job, my home life, and my mood. It’s making me rather depressed to be honest. I’ve tried the meds, tried altering my diet too. Abandoned running altogether. It’s also effecting my voice. I feel like I’m straining a lot, or I have to psyche myself up up for a wordy conversation. Haven’t had covid, endless tests as that’s what doctors thought at first, plus I’ve done an antibody test and it stated I haven’t had the virus. I guess I’m feeling that I’m out of options. I’ve played by the rules of doing things properly like using my spacer etc, cleaning it. Latest chat with doctor 2 weeks ago was, ‘let’s do a review in 2 months’ I just don’t know what to do really. Had pred twice in easy stages, 2 sets of Antibiotics, chest x ray came back clear. Never had anything like this before and I’m 38. Asthma uk nurses are lovely and made me feel a bit better, but practically, going forward I feel like I need a plan. Sorry for the rant, I just feel at sea!

[Beruska3]

Omg this is almost exactly what I'm experiencing. Its like I wrote it,with all the covid tests done, your age, all the frustration, recently diagnosed though wheezing improved but started tightness of chest. And will start 5 day corse of steroid. I also tried diets,and very upset by all this, especially now when we're on lockdown. I have struggled since September. But my partner told me today there will be happy days again and even though past 3 days were scary for me I see a bit of light.

I can't advise much as I'm New to all this but believe you're not alone. Sending lots of hugs and hopefully we get better xxxxx

[Hidden in reply to Beruska3]

Thanks for your reply. It really means a lot! Hoping things improve. I’m sorry you’ve had a bad time too. Nice to know we aren’t alone. Big hugs to you too. Xxx

[LeiLey]

Sorry your feeling low and things aren’t improving with your breathing. I too am quite recent to a diagnosis although it’s not official yet, they were thinking of doing lung function tests first but with covid it’s restricted so it’s suspected and I’m on trial of treatment. I am still taking my blue inhaler a few times also, so recently been put on Fostair 100/6, stairs are a struggle still! I’m wondering if you have had covid recently and that’s why things feel worse with your breathing? I had it in May and became very short of breath and even now they are wondering whether that has something to do with my suspected asthma.

[Hidden in reply to LeiLey]

I thought covid, but I’ve pretty much had a test every 10 days as I’m a key worker in children’s services. Had the antibody test also but It said I hadn’t had it. Got another test today just in case! Sorry you had covid. Hopefully the stairs will become easier. It’s a conundrum..

[twinkly29 in reply to Hidden]

The antibody test doesn't necessarily show you haven't had covid. If it was a long time ago (for example in April), it might be too long as any antibodies you may have had may have gone (or whatever they do!) Or, whenever one has had it, a negative antibody test can mean that their body just didn't make antibodies to it. Sounds odd but I know of several people who had confirmed covid (including a doctor who had 2 positive tests - same illness, not 2 lots of covid!) who all had negative antibody tests.

That said, that doesn't actually help your situation really.

[LeiLey in reply to Hidden]

Thank you hope you feel better soon, I agree it’s such a conundrum! When I had the test, it was day 2 of symptoms so pretty quick really. I haven’t had the antibody test, hope the newest inhaler/meds help you x

[mylungshateme]

Sorry things are so crap atm. You really are not alone this literally sums up my year... it has dragged me down at times too same age as you also RGN, not been able to work since Aug b/h because of breathlessness an uncontrolled asthma although last consultant didn't think was asthma but breathing pattern disorder. Despite other consultants diagnosing severe uncontrolled asthma, eosinophilic asthma and allergic asthma. Also have the sinusitis thing too. Have had lung functions, feno, trying to get off steroids to have further tests but have asked for a 2nd opinion which has been accepted just awaiting appointment. Oh an the whole "its anxiety" - no it's not the only thing that makes me anxious is the consultants making me feel my symptoms aren't real, or not asthma because I don't wheeze or desaturate. Keep coming on here its what's got me through! Honestly learnt so much. X

[CharlieLondon]

Hi Leon, this is quite similar to my experience too. Although I was diagnosed with asthma four years ago. I was running marathons back then. But symptoms got worse over lockdown and since November I have declined rapidly. Now signed off work for a few weeks. I too work for Childrens Services. Feeling guilty about taking time off now when everyone is feeling the pressure. Missing how I used to be, instead cough morning and night, wheezy and so much mucus but determined to get this thing under control. I have gone back on my brown inhaler (clenil) as felt my new meds symbicort could be making things worse for me. I am certainly not feeling as low now that I have changed back. Waiting for appointment with respiratory consultant for more tests. Hopefully your new medication will help, it really does feel like it’s trial and error. I have cut out all processed foods and alcohol since Christmas and am hoping this will make a difference too. Feels like a waiting game. You are certainly not alone. Wishing us all well soon.

[Hidden in reply to CharlieLondon]

Hey Charlie, thanks for your message. Much appreciated. Yes it’s tough isn’t it. Is your main symptom the constant cough/mucus? This used to be mine but now it’s general breathlessness. Is the cold weather affecting you do you think? Yeah work is busy isn’t it. Hope you feel better soon. Hate not running, so I’ve changed to doing some weights. I guess it’s just up and down with asthma... hoping you feel better soon pal. 🙏

[Dot5]

Plan for you till review unfortunately they cant get you more steroids because they dont want you to be use to steroids to often as it will not work as your body will be use to them. Keep a record of everything morning peakflow before meds your prevented inhaler how much puffs . Record how many blue inhaler you needed and also keep a record of what cause the attack for example when a walk around my home outside and it was cold. Need inhaler so that will be a trigger once you are not needing the blue inhaler as often and just your prevented you might be able to run but you might need to take blue inhaler before starting. I am 40 years old and I had asthma since I was five and I still have bad days unfortunately it part of being asthmatics. You will always learn what symptoms you have when you are having a attack. Not everyone with have a wheeze I dont. I have to explain to the hospital that I have 100 per oxygen when I well or not . Just keep writing everything down . Do you know what your normal peak flow is. Start for there. Hope this help ?

[CRNZ26]

I am exactly the same. My asthma that has always been well controlled suddenly became not so much in about April 2020, I’ve had to change inhalers about 3-4 times in the past year and and still constant out of breath with a heavy chest and wheezing. I don’t know what’s going on! The asthma nurse said a lot of people seem to be having this problem at the moment. I did wonder whether it had something to with covid. I haven’t had a test (and don’t remember being ill so will never know) but it’s strange that so many of us are having the same issues.